#NOT IN AN INFANTALIZING WAY!!! I have chronic pain and live with several chronic illnesses myself
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usagichanp · 3 days ago
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Me when Viktor Arcane fic writers include scenes highlighting the reality of living with chronic pain/disabilities
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voiceforourdaughters · 2 years ago
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You might say, "you were hardcore conservative and pro-life 10 years, what happend?" so i'll break it down here.
Disability- in 2017 I started with extreme tachycardia, exhaustion, fainting, insomnia, extreme sweats, GI problems, among several others. In 2018 i was diagnosed with Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (POTS) which has caused a significant loss of mobility, pain, and chronic illness.
Disaster- 2018 was the worst year of my life. I went through a horrifically toxic breakup, i was still recovering from my 2016 divorce from a narcissist, then went straight into a living situation where long story short i went through some weird religious trauma with relatives. I had suicidal idealization/planning and was inpatient for 8 days at the end of 2018. I had been without healthcare for years and was finally properly treated and diagnosed. It was the first time my POTS was properly medicated and the adrenergic part of my condition was treated so i was finally able to sleep properly and find a new normal. It was this time religion as a whole stopped making sense. It was like i could finally see the whole picture and all religion seemed like a way for people, especially a long time ago, to make sense of the world as it was and give themselves a purpose.
Pregnancy- In 2019 I very pleasantly and unexpectedly found out i was pregnant. I had a rough pregnancy, hyperemesis(which is way more likely if you have POTS) among other complications. Even with my doula training without the proper support i had a rough failed induction and traumatic c-section.
COVID- I don't care which side your own, the response to covid, vaccines and just general safety precautions especially by conservatives was horrifying. Watching my own relatives go down the crazy right wing conspiracy theories about how "putin is saving us from the deep state in Ukraine and reptilians in the government" (i am legit not kidding about that) on top of the hard core antivaxx when i am prone to sickness and have an infant was worrying to say the least.
Another divorce- Long story short cheating men can and should go to the dumpster where they belong. They are not worth your peace.
Overturning Roe- I even in my prolife days preached that banning abortion outright will NEVER solve any problems. That we have to go to the route of the issue, the reason women have abortions and provide real options. Comprehensive sex education, super accessible contraception, expansion into male contraception, socialized daycare, more work from home options, subsidized housing, more financial benefits for parents with kids etc. I support safe legal and rare. There will always be situations it is needed in, contrary to my believes in the past, through experience and new studies and growing as a person there are cases abortion is needed. We have a duty to the next generation to stop cycles of abuse and trauma, being a parent has really opened my eyes to how easy it is to fall into bad patterns. Encouraging adoption isn't a catch all solution. Adoption is so incredibly hard and there is almost ZERO support for birth moms, nor are kids that are adopted free from parental abuse, children that were wanted are abused just as often as those that were unplanned. We has a nation need comprehensive PARENTAL education. We have a service to the people currently in this world, we need to take every situation for what it is. In an idealistic world we wouldn't need abortion but we do and it shouldn't be a politicians choice who can and will be bought out for any reason as we can see from the insistence of not only banning abortion but limiting and making it difficult to receive birth control and emergency contraception as well as blatant disregard of body autonomy and freedom to make decisions as a human being. This WILL be a major instance in putting women backwards and leaving us at the mercy of old white men who literally could care less if we live or die.
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pamphletstoinspire · 4 years ago
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Saints to Help if Mother’s Day is Hard
If this is a painful holiday, for any reason, these saints can be a guide.
Mother’s Day can be a beautiful holiday, a day to celebrate your mother or to be celebrated as a mother. For many, though, this is a painful day, as they remember their late mothers, grieve their broken relationships with their mothers or their children, mourn their lost children, or lament the children they’ve been unable to have.
If Mother’s Day is hard for you, it may help to find some saints who can walk with you in your particular struggle. You are not alone.
If your mother has passed away
St. Rafqa Pietra Choboq Ar-Rayès (1832-1914) was a Lebanese girl of only seven when she lost her beloved mother. At 11, financial difficulties compelled her father to send Rafqa out to work as a servant; when she returned a few years later, she discovered that he had remarried. She never got along with her stepmother, who tried to pressure Rafqa into marriage. When Rafqa became a religious instead, she took the name of her beloved mother as her religious name. She suffered from debilitating chronic illness and for many years was blind and entirely immobile.
If you’re estranged from your mother
St. Maddalena of Canossa (1774-1835) was the oldest of four noble Italian children. When she was five, her father died, and two years later her mother abandoned the children in order to remarry. She left them with their uncle (a marquis), who found a governess to raise them. Little Maddalena was devastated and turned to the Blessed Mother for comfort. “I wept … before Mary,” she later said, “invoking her in tears and calling her by the name of ‘mamma!’” Though Maddalena eventually took the title marchioness and acted as hostess in a home so distinguished that it hosted Napoleon himself on several occasions, she longed to serve the poor and abandoned. Eventually, she left her title and her wealth behind to found the Canossian Sisters.
If you’ve lost a child to miscarriage or stillbirth
St. Gianna Molla (1922-1962) was an Italian doctor who married at almost 33 with hopes of having a large family. By their fourth anniversary, Gianna and her husband Pietro had three small children. But Gianna lost her fourth and fifth children to miscarriage; each time she was disconsolate, worried about the fate of her babies’ souls and begging her friends to pray for them. When she became pregnant again and doctors found a tumor in her uterus, Gianna was ready to do whatever was necessary to save her baby, reminding Pietro, “If you must decide between me and the child, do not hesitate: choose the child—I insist on it. Save her.” The baby was born healthy but Gianna died of complications a week later.
If you’re mourning the loss of a child after birth
Sts. Peter Choe Chang-hub and Magdalena Son So-Byok (1786-1840, 1801-1840) were a married couple from Korea. They were parents of a young daughter when they lost their second child as an infant. And their third. And their fourth. Nine children in a row. All died as infants. Finally, another little girl survived, a balm for the grieving parents’ souls, though they must surely have ached for the little ones they had buried. In 1839, when their oldest daughter (St. Barbara Choe Yong-i) was a young mother and their youngest daughter was only 2, the family was arrested along with Barbara’s husband (St. Charles Cho Shin-chol). Having entrusted their surviving children to others to raise, all four adults were tortured and martyred.
If you’re estranged from your child
St. Martha Wang Luo Mande (1812-1861) was a Chinese laywoman who was unable to conceive but adopted two sons with her husband. Unfortunately, their sons became accustomed to wild living, spending their parents’ money even after their father’s death left their mother alone. Realizing that she had done all she could for them, Mande cut them off financially and moved away to run an inn, where she became a Catholic. Mande eventually went to work in the seminary; when the seminary was closed and its students imprisoned, Mande continued to bring them food in jail. And when those seminarians were being taken to their death, one of the guards tried to scare Mande by threatening to kill her, too. “Ah, well, that’s fine,” she said, as simply as always. “If they can die, so can I.” So she did.
If you were never able to conceive
Servant of God Elisabeth Leseur (1866-1914) was a French woman married to an atheist who scoffed at her faith, though he loved her very much. The two were married for 25 years and were never able to have children. When Elisabeth died, her husband read her diary and was converted by the depth of faith and love he found there; he went on to become a Dominican priest.
If you’re unmarried
Bl. Consuelo Aguiar-Mella Díaz (1898-1936) was a vivacious, fashionable Uruguayan woman who moved to Spain as a toddler, where she eventually worked in the property tax office and hoped to marry. At 38, she was dating a Spanish man and approaching engagement to him, but the Spanish Civil War separated them. Consuelo carried her Uruguayan diplomatic passport at all times for her protection, but was martyred with her sister Bl. Dolores Aguiar-Mella Díaz; unbeknownst to Consuelo, only three days earlier her boyfriend had been killed 200 miles away.
If you’re parenting alone
Servant of God Catherine Doherty (1896-1985) was a Russian noblewoman who married her first cousin and served as a nurse in World War I before fleeing Russia during the Russian Revolution. The couple made their way to Canada, where Catherine gave birth to a son. Not long after, Catherine left her abusive and adulterous husband, later becoming a Catholic and obtaining an annulment. She and her son moved to New York where Catherine worked with the poor and fought for interracial justice. She married at 47 (after her son was grown) and, with her husband, founded a community called Madonna House that is still active today.
If you’ve had an abortion:
Servant of God Dorothy Day (1897-1980) was a convert to Catholicism and the founder of the Catholic Worker movement, an international movement of solidarity with the poor. Before that, she was a single mother. Before that, she had an abortion. She’s a beautiful witness of the healing that parents can find after abortion and the way God can work in them to make them great saints.
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brostateexam · 4 years ago
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annual tradition
Under a cut because this is long and maybe not interesting to anyone else but tl;dr don’t get on an airplane for fun y’all
My cousin has been attached to a Spanish woman since a few years after he got his master’s degree in chemical engineering. They both work for a pharmaceutical company here in the Bay Area, where they both are chemical engineers on clinical trials, and every summer they return to the small town where she is from. This uses up basically all of their PTO for the year but it’s apparently a very pretty town and she loves nothing more than being home among her family, so this is not so bad. Also, it’s near the beach and there are lots of people who like to play soccer, so it does not make my cousin too unhappy.
I was invited to their wedding last fall but the combination of its location (from the airport, it would have been an 8 to 10 hour trip) and the timing (two weeks after @branza‘s wedding in Bucharest) didn’t quite work out. I would have had to stay in Europe for about 2.5-3 weeks and I was planning for another vacation with Shane in February/March of this year. So due to a combination of factors, I cannot personally attest to the beauty of the town but I’m told it’s very nice.
It is perhaps this pleasantness, plus the strength of their tradition of summering there, that made them decide to board a plane this summer despite the complete non-necessity of the trip. I should also mention that my cousin-in-law is often sick and in the hospital due to a complex and rare medical condition that I don’t fully understand, and the fact that they have a very small baby who is not yet two years old. Regardless, they bought business-class tickets and made their way to Madrid via Dallas. They were tested and found negative for coronavirus when they left.
When they arrived in Spain, they quarantined in my cousin-in-law’s mother’s house, who presumably vacated to live with one of the many relatives in the town. My cousin started feeling ill shortly after they arrived. His condition worsened throughout the mandatory quarantine period, and the second day after the quarantine was over, he went to the ER of the small town for severe abdominal pain. They diagnosed him with gallstones, and advised him to return home for the surgery, as gallbladder surgery is considered elective unless it’s emergent and, as a non-EU citizen, he would be liable for the costs.
They decided to return home a bit early, as he was in pretty severe pain and was, to put it mildly, not enjoying the trip. Shortly after getting home, he spiked a fever. Worried that this was the feared emergent gallbladder situation he had been warned about, he went to the hospital here in the US and was diagnosed with covid.
Because he lives with his immuno-compromised wife and infant son, he is quarantining with two of his friends, who drove him home from the hospital, and willingly exposed themselves to covid to take him in. His condition so far is stable and he has not had a need to return to the hospital.
Given the timing of his symptoms and his negative test prior to his departure, it seems most likely that he was exposed while he en route from the Bay Area to Madrid. Despite sitting in business class, he told my mom that the person next to him basically kept ordering complimentary drinks for the duration of the flight from Dallas to Madrid so that he could remain unmasked.
I’m thankful that he is not in worse shape. I’m furious they thought it was a good idea to go to Spain, and route through Texas to boot, for a pleasure jaunt with their tiny baby, especially given his wife’s chronic health concerns. I was already feeling kinda iffy about setting foot on an airplane until there is an effective treatment or vaccine, but I’d thought that if I had to, business class would be the way to go to avoid infection. I’m less sure now.
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empaths-hsp · 4 years ago
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The Link Between Highly Sensitive People and Chronic Fatigue
HSPs tend to do more mental work than others — one of the key causes of chronic fatigue syndrome (CFS).
Chronic fatigue is one way that our body expresses what we’ve been unable to. As a highly sensitive person (HSP) — someone who feels deeply and easily gets overwhelmed — I tried to push past these traits for years. I pretended to be less affected by time pressure, (emotionally) stressful situations and loud, crowded environments than I was. I simply adapted while doing my best to not expose how rattled or upset such circumstances actually made me feel.
I didn’t realize it, but pushing myself to be something I wasn’t, forced my body to speak up. Thanks to the demands I put on it, my energy levels began plummeting drastically, and I experienced different symptoms, including weight loss and brain fog. 
At first, I thought it was because my digestive system was out of whack, but blood tests didn’t show anything wrong, and the changes I made to my diet seemed to help only a bit. But I couldn’t shake feeling totally wiped out, and that level of exhaustion often came with muscle aches, poor sleep, and even feeling as though I was coming down with the flu. 
The Road to Chronic Fatigue
I decided to visit the doctor’s office to see what was going on, and it was unsettling. The doctor was new at the clinic — a peculiar old guy with a dry sense of humor. Initially, he didn’t show much empathy, exclaiming, “Well, there certainly isn’t much meat-juice left in you!” Despite his demeanor, though, he actually said a few spot-on things. I thought my thyroid might be overactive — the symptoms seemed to match — but he brought up another possibility: chronic fatigue. 
“We won’t take any more blood tests since it’ll only repeat your feeling of not being seen,” the doctor wisely said, sharing insights gained from a lifetime of experience. “Focus on building yourself back up again.” His secretary, who afterward kindly comforted me, stated that “I looked like something the cat had dragged in.” And while I could’ve taken offense at her words, it felt more like a breath of relief. Finally, someone was taking my anguish seriously and acknowledging how sick I felt! 
The Connection Between Sensitivity and Fatigue
HSPs, like introverts, tend to reflect deeply on the world around them, and do lots of ”inner labor” that remains invisible to those around them, and therefore isn’t considered valuable. 
We’re constantly trying to adapt to a pace not aligned with our natural tendencies — and a value system that prizes achievements and accomplishments rather than internal developments — all of which takes a toll on us, as many HSPs can attest. Whether it is habitually tightening our muscles to keep ourselves together or clenching our jaws to ”power through” something, our bodies take the hit.
Too much and our bodies will start speaking up, as mine did. Chronic fatigue doesn’t have a known cause (though depression and overwork are associated with it) and rest won’t make it go away. But I believe that several high-stress incidents — like taking on limiting familial beliefs, or unwittingly absorbing and feeling trapped in loved ones’ crises and stresses — impacted me as a highly sensitive person, and by ignoring them or trying to respond in a way that wasn’t true to my sensitivity, I developed the condition. 
Repressed anger played a role as well for me. Anger can be a scary emotion and HSPs are often softhearted empaths who struggle with expressing it constructively, if at all. Unfortunately, we tend to suppress it or turn it towards ourselves in destructive ways, all to our detriment. Instead, we could use this vital life-force energy for healthy boundary setting, especially for shielding our sensitivity and for building a sense of personal power and agency. 
I have a suspicion that my illness is linked with forcefully pushing myself in an attempt to live up to the norms and ideals of society. On top of absorbing emotions and repressing anger, I come from a place inhabited by mostly practical-minded people with a traditional work ethic. Beyond a certain age, they frown upon behavior that seems lazy (because it’s not as productive as they think it should be), so being a deep-processing, quietly-observing, and emotionally-responsive person isn’t always understood or appreciated, let alone celebrated. 
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Recovering from Fatigue as a Highly Sensitive Person
My recovery hasn’t been easy. I still feel physically sick if I go into negative thought loops. And I don’t seem to be able to cope with pressure, from outside or inside. Recovery almost resembles taking care of an infant. 
I suppose I must accept it and learn how to become a responsible, loving caretaker of my physical, mental, and emotional needs by giving my body sufficient rest, plenty and proper nourishment, and living as free from stress as possible. To use mere willpower to make my body do something or push myself doesn’t work. I can’t do it anymore.
I have to be in tune with my needs and make appropriate decisions, moment by moment, based on my body’s signals. If I don’t, I reap painful consequences almost immediately. My body is a strict teacher, speaking in capital letters if I don’t treat it exactly how it needs, now. 
Channeling My Experience into a Creative Project
My exhaustion took a very serious toll on my body. But it had one upside: it made me put pen to paper. I felt an acute urge to express myself, to explore inner workings and themes. 
Last year, I wrote a novel titled What’s the Matter with Maria? It’s a tender tale about a sensitive and introverted little girl, Maria. And although my book is fictitious, it‘s inspired by my personal experience pushing myself to adapt to the kinds of outer demands which often produce some degree of internal agony.  
Thinking about the inspiration for the book takes me back to that taxing time when I first fell ill. The memory is palpable — I can’t help recalling how awful I felt both physically and emotionally. I know my little protagonist Maria’s anxious alertness well, her feeling of not being enough, falling short, and that her highly sensitive traits are wrong or inferior.
My wish for all highly sensitive people — both children and adults — is that they understand and respect the language of their finely-sensing bodies from an early age. A proper education in how best to preserve, protect, and nourish our precious energy is crucial to prevent steady energy drains and leaks. With its advanced capacity for sensing subtleties and fine distinction, let your highly sensitive body be your primary guide in life — allow it to be your personal compass.
Please don’t ignore or downplay the symptoms and sensations your body so generously provides. Even if nobody else seems to understand or see good reason for them, the warnings will turn up the volume to catch your attention. Instead, honor your innate sensitivity by being responsible, which means being responsive and making every adjustment to maintaining your health that you possibly can. After all, you are the only one who knows exactly how you feel. 
You might like:
For HSPs, Compassion Fatigue is Too Real
How to Stop Feeling Exhausted All the Time as a Highly Sensitive Person
13 Problems Only Highly Sensitive People Will Understand
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firbeach17-blog · 4 years ago
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Canzana CBD Oil United Kingdom Updated Reviews 2020
Canzana CBD Oil UK: While CBD Oil is quickly readily available in the UK nowadays because the U.K. has lower Marijuana policies on use than the other countries. But still locating the high quality CBD Oil is a huge challenge. Due to the fact that there are a lot of brands that claim to offer the most effective top quality but the concern is just how to identify which is the most effective. So to make you buy the most effective product for your wellness we have actually tried several items. And also we located the Canzana CBD Oil UK is the most effective Cannabidiol Oil. Today's post is an in-depth testimonial of this product. So keep reading. Till currently we have informed you only the item name. And it has actually addressed your one issue i.e. which is one of the most suitable CBD Oil and you have actually conserved the money that you can have squandered on buying and also trying the item. Most of all, jeopardizing with your health eating the low-grade CBD items. Still, there is a whole lot to learn about Canzana CBD Oil like why we are advising this, etc. What is Canzana CBD Oil? In Canzana CBD Oil UK, Canzana is the firm name and also CBD represent Cannabidiol Oil. Cannabidiol is a compound extracted from the cannabis plants and additionally from the hemp in which THC is extremely reduced It is getting much popularity around the world due to the fact that like THC which exists in cannabis plants as well as Cannabis doesn't make you high. Put simply, it does not influence your brain It is really handy if you wish to get relief from persistent pain. Apart from this it has lots of other wellness advantages which we will discuss even more in this post. So maintain analysis. How does Canzana CBD Oil Work? In the body, ECS is in charge of the appropriate functioning of your physical as well as emotional activities that are much quite related to the brain. ECS plays a crucial function in eating, sleeping, etc The CBD Oil works to regulate the function of ECS as well as hence promotes better psychological and physical wellness. It helps reducing anxiousness and stress, cures insomnia these illness are just a few to call. In short, it has many more benefits that you will learn more about additionally in this write-up. How to make use of CBD Oil for pains?
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There are 2 means to make use of CBD Oil for obtaining relief from discomfort. Initially, area 1-2 decreases of CBD Oil under your tongue and also shut your mouth. Second, the very best method to eat CBD Oil is the very first technique however in case you don't like its preference after that obtain 1-2 decreases on your hand and also massage over the area you are experiencing pain and see to it obtains soaked up in the skin entirely. In the event, you have any other inquiries regarding the use of Canzana CBD Oil, you can ask us through the remark section listed below. What is Canzana CBD Oil Benefits? Canzana CBD Oil is beneficial for getting over anxiety as well as stress and anxiety It is very practical in obtaining relief from persistent and also old age joints pain It can assist individuals leave clinical depression In addition to the above advantages, it has neurological advantages as well It has anti-oxidant and anti-inflammatory homes Increases the concentration power of a person Boost the immune system Cures mood swing in addition to sleep problems Offered without prescription from a specialist Totally all-natural as well as any person can eat it How to know the CBD Oil you are utilizing is secure to utilize CBD Oil is not legal in all the countries but you can still buy it since the FDA does not manage it as well as it is readily available as a nutritional supplement for all. But still, there are some standards that are released by the UK govt to make sure it does not impact the wellness of a brain. Actually CBD does not impact the THC discovered in Cannabis plants in addition to CBD makes an individual mind high. So, right here's the guide that can aid you understand the CBD Oil you are using is secure to utilize. Ensure the firm has supplied all the details i.e. the quantity of CBD and THC in the product The allowed limitation for THC to eat is only 0.1%. The lower the THC percentage the much more secure the product is to utilize as well as the other way around And Optimum amount of CBD an individual can take is 1600 mg CBD intake varies from person to person's body weight. According to "medicalnewtoday" begin with 2.5 mg per kilogram of your body and also you can go as high as 5 mg per kilo of your body weight. For more info on this see the above-given link. Who can Utilize Canzana CBD Oil? Canzana CBD Oil aids an individual to get remedy for chronic pain and joint discomforts. It is drawn out from the herbal plant and also does not have any type of negative effects. 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Individuals throughout the world are utilizing it and are extremely pleased with the outcomes it supplies once you start to eat it. Where to buy Canzana CBD Oil in the UK? Whether you are living in the UK or in various other countries. The Canzana CBD Oil is readily available to purchase from the official website only. Since the company has not yet made this item to any kind of online e-commerce store and other neighborhood drugs save except its main website. We think the company has taken this decision to stop the duplicity and to see to it the client constantly obtain the top quality product. And it is certainly a wise choice by the company. Purchase Canzana CBD Oil Click the above web link It will reroute you to the main internet site Feel up the asked information and Click on the area your order currently Within 7 working days excluding the legal holiday of your country. The item will be supplied to your doorsteps. 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carrotweed2-blog · 4 years ago
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Canzana CBD Oil United Kingdom Updated Reviews 2020
Canzana CBD Oil UK: While CBD Oil is quickly readily available in the UK nowadays because the U.K. has lower Marijuana policies on use than the other countries. But still locating the high quality CBD Oil is a huge challenge. Due to the fact that there are a lot of brands that claim to offer the most effective top quality but the concern is just how to identify which is the most effective. So to make you buy the most effective product for your wellness we have actually tried several items. And also we located the Canzana CBD Oil UK is the most effective Cannabidiol Oil. Canzana CBD UK Today's post is an in-depth testimonial of this product. So keep reading. Till currently we have informed you only the item name. And it has actually addressed your one issue i.e. which is one of the most suitable CBD Oil and you have actually conserved the money that you can have squandered on buying and also trying the item. Most of all, jeopardizing with your health eating the low-grade CBD items. 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scripttorture · 5 years ago
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My character was born in a Christian cult, the child of the "prophet." Due to being both mute and intersex, they and their mother were confined to a small damp room for the next 15 years, to be prevented from "corrupting" the rest of the faithful. Other than their mother, no one showed them any physical or emotional affection growing up and they weren't allowed to learn how to read or write. They weren't fed enough or allowed outside. What would their mental state be like after escaping at 16?
I think we should start with the character’s physical state because this kind of abuse starting at a young age causes lasting problems.
 Starvation or lack of proper nutrition at a young age can be deadly. But more often poor nutrition for young children results in developmental set backs, life long health problems and lower intelligence.
 There’s an example of a recent case that made the news here. The WHO statistics on child malnutrition can be found here. The WHO’s guide to identifying malnutrition in infants and children is here and their guide to treating it can be found here.
 Children who are not fed properly in their early years are shorter, weaker, more prone to disease and less intelligent then their well fed peers.
 This holds true for relatively short periods of malnutrition in infancy (6 months to a year), even when children are well fed later in life. You’re talking about a character being malnourished for pretty much their whole childhood.
 I don’t think they’d die but depending on the degree of malnutrition I’d expect to see some pretty severe disability. This would typically include being behind in all developmental milestones, significantly lower intelligence, being prone to disease and infection, weak bones and being short.
 It might also include putting on a lot of weight later when their food isn’t restricted. Stress, abuse and lack of food early in life can lead to obesity. This has generally been explained to me as the body compensating for lack of food by storing as much energy as possible; it thinks another famine’s coming.
 The dampness in the room is likely to encourage infections and disease. Combined with a lack of food I think this character would be seriously ill most of their childhood and that a lot of these infections would recur on release.
 An idea of how small the room would have been helpful in this scenario because- well askers have used that term to refer to anything from a box to a good sized cell and there’s a considerable difference in outcome in those cases.
 If the character can’t stand or pace they might never learn to walk. If the room is so small they can’t lie flat then they wouldn’t survive to reach 16.
 Assuming it is a room- they’d likely be much weaker then expected for their age, even accounting for their lack of food. I’d expect lasting joint problems, coordination problems and possibly problems involved with response times.
 Also poor eyesight.
 I haven’t even started on the problems caused by isolation and an inability to communicate caused by severe neglect. Or the long term psychological effects.
 At this point I think it’s worth asking if this is the kind of character you want to write.
 I think it’s important to include disabled characters in our stories, they’re one of the most under represented groups in fiction. But I also believe that we should try to make sure that representation is good. That it reflects the people it portrays.
 And when you’re talking about so many intersecting complex disabilities and conditions that’s a big ask.
 Each of these conditions individually asks for its own research. They effect each other. And finding sensitivity readers or just people with all these conditions talking about their lives- that’s a big task.
 And the way readers interpret the character will also be effected by the fact most of these disabilities are deliberately inflicted.
 How much are you prepared to read about how society treats people with intellectual disabilities and how those people feel about the way they’re portrayed? Do you feel confident tackling the way they’re almost universally portrayed as victims in fiction when you’re writing a character who is victimised?
 I’m not saying you can’t or shouldn’t write this character. What I’m saying is that the lasting effects of the abuse you’re putting this character through are complicated. I think you’d have a much easier time writing the character realistically (and in a way that’s respectful to people who have all these conditions or disabilities) if you cut down on the abuse.
 If you do really want to go through with this I have a post on the effects of solitary confinement here. I’m including it because it’s not clear from the context of the question that this character has more then two hours of daily, positive and enriching human contact.
 At the ages you’re talking about isolation, even for short periods of a week or two, would have a severe impact. I can’t tell you exactly what that impact would be. Thankfully the experiment has not been performed. But I would expect another hit to the character’s ability to learn, lower intelligence, less ability to interact with others and serious mental health issues lasting the rest of their life.
 Those mental health issues would be compounded by the mental health issues they’d develop because they’re being abused.
 I’ve got a post on the common symptoms of torture here.
 Given the extent of the abuse and the really really long period it’s occurring over- I’d suggest picking out more symptoms then usual.
 Given the way you’ve described the cell conditions and the overlap with starvation and solitary confinement symptoms I’d strongly suggest including chronic pain, significant difficulty learning new skills, significant difficulty interacting with others and memory problems (which you can read more about here). I’d then suggest picking at least 3-5 more symptoms from the list of common symptoms.
 Remember you need to balance these with the physical problems I described earlier.
 If this sounds like too much then I’d suggest cutting back on the abuse the character is put through.
 Give them enough to eat. Give them space to run. Give them natural light. Don’t make their cell damp, too hot or too cold.
 Let them be taught some form of communication, home-signs would do. Show that they had enough positive interaction growing up to learn and develop, even if it’s only coming from their mother.
 The isolation alone at this age, for this time period is enough to have serious, lasting mental health effects. It’s also likely to cause eye problems and general muscular weakness.
 In that scenario, I think you’d be alright picking 3-5 mental health symptoms from the list of solitary confinement symptoms. Rather then the 7-9 symptoms I think would be reasonable with your original scenario.
 It’s up to you. And I think a lot of it comes down to how much time you want to spend researching. Because you can write about all of these conditions without putting them all in the same character.
 I hope that helps. :)
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reading-while-queer · 5 years ago
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Adult Onset, Ann-Marie MacDonald
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Rating: Great Read Genre: Realism, Literary Representation: -Lesbian protagonist -Lebanese protagonist -Protagonist with anxiety/panic disorder Trigger warnings: Infant death, Stillbirth (explicit), Child abuse, Child sexual abuse (not in scene), Homophobia, Misogyny, Biphobia, Animal death, Internalized racism, Reclaimed D-slur
Note: Not YA; somewhat sexual but not explicit
Transitioning into reading more adult fiction than YA in your early twenties is often unpleasant.  Disturbing topics make a happy home in adult fiction, and they don’t always announce themselves in the book jacket.  (Adult Onset’s book jacket even describes the novel as “hilarious” - a fact which is hilarious in itself. Are adults okay?) The disturbing topics aren’t bad in and of themselves.  Adult readers of these difficult literary novels can sometimes resonate with the battle between ugliness and meaning, finding catharsis in the trenches.  Some readers may even find an unpolished aspect of themselves reflected in the novel, their relationship to the book becoming a form of literary therapy. The books that save lives are rarely the easiest reads.  By the same token, undertaking a difficult literary novel can put a bitter taste in your mouth. Sometimes that moment of catharsis isn’t worth the taste.
I found myself waffling over my opinion about Adult Onset.  On the one hand, it’s about the generational gift of abuse from mother to daughter, and the ugliness of that abuse is not safely contained within a “bad guy” the reader can despise, but in sympathetic characters.  It’s an uncomfortable book with a subject matter that isn’t going to appeal to the escapist reader, that’s for sure.  On the other hand, as we get older, many of us develop more tolerance for morally gray characters as we discover that we are morally gray ourselves; it can even be refreshing to read about someone with our same flaws - flaws bad enough we might hesitate to speak about them - treated not as evil, but human.  Reading Adult Onset, I felt myself straddling that line.  Yes, Adult Onset was an uncomfortable, unhappy read.  But at the same time, I saw glimpses of myself in the main character’s serious anger and anxiety.  While I’m not a mother in my mid-forties struggling to manage a suburban household, anyone who has had to grapple with mental illness or abuse will feel kinship to Mary Rose.
Adult Onset is one of those books that can’t be measured by plot. The narrative is urged forward by the compulsion of symmetry, not linear time, and so the story takes a beautiful, mirrored shape, rather than the parabola of a plot arc.  The central character, who is the line across which the shape of the story is reflected, is Mary Rose (“Mister” for short), a lesbian mother of two who used to write YA novels, but who has since traded roles with her wife in favor of home-making, giving her wife a chance to follow her career as a theater director.  Mary Rose has untreated anxiety that causes her to catastrophize everything in her life.  She has untreated anger that causes her to yell and throw things in front of her kids.  She is kind of a dick, to use the most accurate term, which causes her to ask her wife, “If she got the flowers?” when Mary Rose never sent any flowers (but feels like she might be in trouble if she doesn’t make some claim at a redeeming quality).  Mary Rose is also the heir to two generations of abuse.  Her maternal grandfather married a twelve year old child.  Her mother hit her and her brother (her elder sister had a different experience). Both parents rejected her in the most severe way when she came out as a lesbian in her twenties.  She has chronic pain from childhood bone cysts, a pain which leads her down the rabbit hole of memory as she tries to find some closure on a childhood that her aging parents don’t fully remember anymore.  
Adult Onset is a good book.  It’s a beautiful piece of art.  The structure of the novel is inspired, leaving one more than satisfied with the symmetrical beauty of it all.  The narrative about Mary Rose is inter-cut with glimpses from Mary Rose’s mother’s perspective, showing the reader not an old woman with memory loss, but the young mother struggling with postpartum depression she once was.  We also receive the perspective of the main character from Mary Rose’s popular YA book series, a young girl whose magical adventures were unwittingly inspired by Mary Rose’s trauma.  These snapshots of other points of view are unannounced, and even confusing at first - but therein lies their value.  Mary Rose’s identity bleeds into her mother and her main character, and the structure of the novel itself illustrates that.
Adult Onset is a good book.  It takes Mary Rose’s flaws, holds them before the reader, and says: motherhood is not easy, and you’re not a bad person for floundering. It explores where the line is, that makes a person irredeemable.  Mary Rose almost hits her toddler, and she thinks with horror - what if there is an alternate universe where she really did?  She thinks about her own life in those terms, considering that while she is the Mary Rose who was abused by her parents, perhaps there is an alternate Mary Rose who wasn’t.  She loves and defends her parents as if they didn’t pass her trauma down to her, as if she were the lucky Mary Rose - yet she still contends with the unhappy result. She asks herself: if her parents don’t even remember her childhood anymore, are they still the parents who did and said the things that hurt her?
Adult Onset is a good book, but it is also a book that very artfully dances around a concerning issue with its theme.  Herein lies the problem: Adult Onset gives itself an almost impossible task, that of fixing Mary Rose’s unhappy life into a somewhat happy ending.  Mary Rose almost hit her toddler, her marriage is on the rocks because she keeps yelling at her wife, and she refuses therapy to the bitter end.  The reader won’t be satisfied with the realism of the book if Mary Rose changes too much for the better, nor will the reader be satisfied with an unhappy ending.  In the end, Mary Rose doesn’t really change, so much as realize she can ask for help.  She asks a friend to come over and stay with her for a couple of days while her wife is out of town, and she has an all-day play-date with a mom from her son’s preschool - a mom who Mary Rose has always believed is perfect, but who whispers to Mary Rose, “You saved my life today.”  Mary Rose could have said the same thing, a fun little turn of the tables with the positive message that there is no perfect mother.  Women suffer far too much unaddressed misery, desperation, and shame (with dire consequences), but there is solace and reprieve in one another’s support. This one play-date, and the lesson therein, is the cathartic moment of the novel.
Yet one play-date carries a heavy burden, if it is to be the cathartic moment of a novel about abuse, infant mortality, anger, anxiety, lesbianism, and motherhood.  On reflection, a reader might be more horrified than satisfied, that a play-date is the only help Mary Rose is to receive. Perhaps MacDonald would agree, because after this play-date from heaven, Mary Rose’s life magically falls into place in all sorts of ways.  She’s the mom who has it together now, offering organic pretzels to the lesser mothers who forgot to pack a snack for the park.  She even makes peace with a memory of her father’s homophobia, satisfied by how far he’s come in the twenty years since.  Her wife, who hasn’t wanted sex over the course of the novel, suddenly changes her mind when she finds some lingerie that Mary Rose bought for herself (even though she didn’t even really want it). Mary Rose’s experience of gender is what some readers might call dysphoric, but Mary Rose herself calls “internalized misogyny.”  She feels like it’s wrong of her to be uncomfortable with womanhood, so when her wife tells Mary Rose to wear the lingerie to bed, reminding her with exasperation that “I’m attracted to women,” Mary Rose falls in line.  What a tidy ending! Motherhood? Resolved. Relationship with parents? Resolved. Sex life? Resolved. Complicated lifelong relationship to gender? Resolved.
This was the real key to my discomfort with the ending of the novel.  The message seems to be: if you’re about to self-destruct (taking your children down with you)... just get with the program.  At your breaking point? Just ask your friend to come over with spaghetti.  Just set up a play-date.  Just perform motherhood better.  Just perform womanhood better.  How sad is it, that this was all the book could give Mary Rose? If the theme of your novel is also the Nike slogan, it’s not as radical an outlook on life as one might think.
The weak ending aside, there are only a few such cracks in the perfect veneer of Adult Onset.  The Gen X humor is off-putting (What’s up with Facebook, ladies, am I right?), and Mary Rose obnoxiously discredits her wife’s bisexuality, saying “She refuses to call herself a lesbian.”  She still uses the word “transgendered,” too, which even word processors auto-correct these days.  And yet, for all its flaws, Adult Onset is a good book.  If you have anger and have ever been a hair's breadth away from hitting a child in your care - and let’s face it, this is the unspoken shame for many, many mothers - it’s a book that will make you feel seen, and understood.  The mothers that have hit their children in a moment - or months, or years - of weakness are seen too, in Mary Rose’s mother, who is neither torn down nor excused, but simply put to the page.
Adult Onset is a good book, yes, but do I recommend it?  Not to everyone.  It’s a frustrating book.  It covers topics that may be triggering. It’s a book that can, and probably will, ruin your day (Gen X humor just isn’t enough to cut the despair, folks).  On the other hand, it offers an underlying message that not every book can give you: Even if you didn’t solve the problem, even if you’re just barely hanging on by a toxic “Just do it!” attitude, there is grace for you.
For more from Ann-Marie MacDonald, visit her website here.
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kingofthewilderwest · 5 years ago
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How can you be proud of being Celiac? That’s like me being proud of having my arm ripped off by a shark and gloating about how awesome having one arm is. Being broken isn’t something to proud of. It’s shameful you just need to get over it and eat what people give you people in Africa are starving and here you are complaining about food. Grow up.
Sorry your post just sounded condescending like people aren’t allowed to talk about a normal thing like food because you are triggered by food and don’t seem to understand people are starving in third world countries and you are acting like being a burden to others because of your so called food allergy is a good thing. Get over it and eat what people give you stop being a big baby just eat it the worse that can happen is you get a tummy ache. Unless your allergy is deadly you have no excuse.
Heya friend! It’s great to hear from you and I’m hoping you’re having a spectacular, relaxing day! You’ll be glad to know that my emotional low from last night is over. I got a good night’s rest, woke happy, and am ready to blog about dragons and other non-personal things you may enjoy more! :D 
I also want to say I got your later ask. I’m touched you went and learned more about Celiac, and took the effort of sending me a kindhearted follow-up. I don’t know many people who would do that, so huge kudos, dude. It’s cool between us, friend, and I’m not offended. Thankfully I’ve got a tough hide and it takes a lot more to make me blink. I’m just feeling grateful you came to stop by again.
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I hope it’s okay with you if I respond to your original message, though. There’s still a number of things that bother me, which weren’t nullified with your final message, which I would like to respectfully address.
I’m sorry if you or anyone else felt I spoke condescendingly or selfishly. I never wish to make others feel unwelcome. I was hoping to vent my perspective while showing that I care about others’ perspectives on this topic. If my words suggested negativity toward the other party, I did exactly what I didn’t wish or intend to do, didn’t even feel toward them, and I’m sorry for hurting anyone in the process.
What my post was about (for people catching up on this convo)
Last night under a Read More, I wrote a rare train-of-thought venting post. As you might expect on a personal vent post, I was emotionally compromised, obviously unhappy, and talking about my feelings. I talked about what it’s like for me to have a squick on food as a conversation topic.
I discussed how I felt uncomfortable but let everyone socialize, talk, etc. about food in front of me, because I didn’t find it worthwhile to bring up my discomfort and find compromise, and because I wanted to put my friends’ happiness first. In the few times I confided with friends that it bothered me, little changed afterwards. I’d rather stay silent and make people comfortable than worry I’m a social burden by restricting conversations on food, or have people try to cook accommodating dietary restrictions they’re not educated on accommodating. Essentially, I constantly fake friendly and minimize my social impact so others have fun and I’m never seen as a spoilsport or bother.
I said Celiac Disease means it’s hard to partake in trust-forming cultural food rituals (dinner parties, gifting food, religious ceremonies). I said don’t enjoy food related socialization because I feel socially left out and unable to bond in the activities everyone else can bond in. While I’m comfortable with Celiac Disease, proud of being gluten free, I said my challenge comes with interacting in a culture that can’t easily include me because of dietary differences.
I mentioned food’s also an uncomfortable topic because it’s central to ongoing mental illness struggles: I had eating disorder issues in college, and also have chronic difficulties eating properly in my Depression swings. Since food is a battle I’m constantly fighting, I have negative associations with it.
To make things clear: there was no point I said I forced others to comply with my desires and comforts, or believed people should be censored for talking about everyday things they liked. There was no point where I said that I felt like a social burden because of pride in my diet, or that my pride was what made me a social burden. I’m not happy that my squick and food intolerance can infringe on other people’s comforts, especially when I know they want to connect with me relationally and I have to awkwardly decline that goodwill gesture.
Aaaaand now we’re all on the same page!
About Celiac Disease the medical condition
Celiac Disease is an autoimmune disorder where the body responds to gluten like poison. Even small amounts of ongoing cross-contamination can result in permanently damaged small intestines. Long-term effects of ingesting gluten include everything from anemia to infertility to osteoporosis to neurological disorders / brain damage to cancer risks. It’s imperative for Celiacs to eat a strict gluten free diet for health.As an infant, before I got diagnosed and was put on a gluten free diet, I was malnourished, with a distended stomach, losing weight. Before the USA required health insurance companies to accept people with pre-existing conditions, I was denied coverage because I was considered a “high risk” medical liability.
Short-term effects can be nasty. Everyone’s different when they have a one-time exposure incident, but the last time I accidentally ingested gluten, I was vomiting, dry retching, disoriented from extreme vertigo, and reduced to shaking violently, uncontrollably on the floor for 2+ hours. It was so bad I feared I’d somehow ODed on ibuprofen (because it felt similar to ODing… heh, the one time I did accidentally OD myself, it was THE worst I’ve felt physically in my LIFE).That time spent trembling on the floor doesn’t include the diarrhea, bloating, headaches, etc. that followed once I felt comfortable standing and walking again.All that happened because a restaurant didn’t take my order seriously when I carefully specified “gluten free noodles.” Because somebody in the kitchen thought I’m some entitled special snowflake, eh? Funny joke to make the finicky eater eat what they don’t like, huh?
Even for allergies with no long-term health complications, I think it’s bad to hold the burden of social “kindness” on the person being offered food. In a situation where someone offers food to another, it’s socially dispreferred to decline the meal. Depending on culture, it can be seen as extremely rude.But nobody should have to HARM themselves to please a gift giver. That’s what happens when people with food issues accept a food gift. Doesn’t matter that the food’s offered in good faith. Doesn’t matter if it’s only one night of bloating and headaches. I shouldn’t have to stab myself in the hand if someone offers me a sewing needle. I know culturally food’s a big deal, but that’s why we contemporary society needs better education on dietary restrictions, allergens, and intolerances. It’s frankly terrifying that someone is called SELFISH for not wanting to be HURT. There’s polite ways we could thank a person, decline their offer, and show we care about them through other means.
About Celiac Disease, pride, and identity
I’m only “broken” because others say I am.You’re not broken for being unable to digest arsenic. You can still eat healthy, nutritional foods and live a full, productive life. Same with me. It’s just my poison’s gluten. It’s easy to eat balanced meals and get every protein, every chemical, my body needs. My body isn’t breaking down.That’s hardly the same thing as a shark attacking me in some near-death experience. And let’s give sharks love, by the way! More people die from elevators. [source! XD]
Your analogy with the arm worries me, friend. Talking about someone’s disability that derogatorily is ableist. While losing a limb can be traumatic for many and requires enormous, challenging lifestyle changes… calling someone “broken” for one less appendage is regrettably offensive language. 
I think it’s interesting in one sentence you call me “broken” and use the analogy of a near-deadly shark attack… and then in the next sentence downplay my issues as so irrelevant they’re just a “tummy ache.” Which is it, friend? I’m thankful you read up on Celiac and now know it’s more severe than that, but I hope when you run into future instances of even people with “lesser” allergies, you might reconsider how you discuss our everyday diet and food social choices. 
I’m not proud of Celiac Disease because it makes me a finicky eater (contrarily, used to menu limitations, I’ll gratefully eat just about anything safe). People with food intolerances aren’t finicky eaters; they’re people trying to protect their health. What I mean by pride is confidence in my identity and pride for the lifestyle Celiac has given me.
Pride in identity, even about unideal sides of us, I think is healthy. We cripple ourselves if we’re unable to emotionally accept we’re imperfect. And I don’t mean something like “proud of being a jerk.” I mean “proud of getting through life.” Pride in experiencing bad circumstances makes sense. I’m NOT saying my diet is Some Giant Trial, but when people go through trials, we can take pride in that we survived, grew, and matured through pain. Difficulties mold us into better people, so while we might not enjoy suffering, we can take pride in the better person suffering made us be. Honestly, in the areas where I have gone through major shit, I wouldn’t change anything about that past; I’d rather have learned from the pain than be the fool I was before.
Pride in our identity is also about accepting we can be unique people, comfortable differing from the crowd. The reason I’m happy and comfortable is that for me, Celiac is a lifestyle, not a limitation. We define ourselves by how we interact and integrate with culture. Diet is one way we can find lifestyle and comfort. Even if I could magically eat rye tomorrow, I wouldn’t. I never would, because a gluten free diet is ingrained into my cultural, everyday thinking and lifestyle. People can take pride in their family’s Thai cuisine; others can feel happy in something like vegetarianism or gluten-free eating, too. It’s part of my identity. I like that avoiding gluten has allowed me to think critically of my health and diet, be confident in being individual from the crowd, and be conscientious not only in how I consume food products, but how I choose to delegate my time and money. I also feel like it’s taught me how to be more self conscious of what others may need, and to be content with what I can have. It definitely doesn’t make me a perfect person (heh, I suck), but I think it’s taught me valuable things, and I’m proud that I can continue living this lifestyle as part of me.Also I frankly would feel weird as FUCK if I could just walk up and eat something without thinking. That’s… that’s not normal to me. xD I can’t untrain two and a half decades of constantly reading labels, haha!
The morality of focusing on everyday woes
Logical fallacies are unsound arguments which use incorrect reasoning. In other words, if someone uses a logical fallacy, their arguments are useless. The Fallacy of Relative Privation is a logical fallacy that disregards information because more important problems exist elsewhere. It fails to take into account that multiple problems can exist on our radar simultaneously, and that we as humans have a right to handle both serious and simple issues in our lives.As you may see now, your first message did use that fallacy.
I’m no Great Moral Teacher… I’m an idiot human like the rest of us… but I hope it’s not presumptuous of me to consider…The existence of starving, dying children in “third” (and first!) world countries… doesn’t mean I shouldn’t help my neighbor’s child when she gets a sprained ankle. Why would I sit back when she’s injured? We make positive impact when we treat sprains. By contrast, criticisms make zero positive impact. Doing kind deeds, big and little, will ALWAYS make more net good than not doing small kindnesses. Personally, I suspect we can’t provide optimal sympathy and change the world… unless we’re able to acknowledge and handle all manners of struggles. Are we truly a kind person if we tout about Big Political Issues while ignoring every emotion and feeling that makes a human tick? Are we providing the best response to someone who’s lost their home in a hurricane… if we’re not comforting them through that tragedy like they’re an everyday neighbor?I’d probably look like an asshole if a friend who hadn’t eaten all day came to me, said they’d lost their wallet, and asked to borrow five bucks – and I said, “Grow up, there’s starving children in Eritrea.” I don’t have to lend the $5, that’s chill, but telling him his problems are nothing because of starving kids is… well… ridiculous. That’s an ABSURD, out-of-proportion response to something I can easily fix, no fuss.There’s no reason I can’t say, “Sure, pay me back next week,” hand him $5, and then when I get home, make sure I’ve sent my $50 monthly donation to [insert NGO here]. I’d definitely be an asshole friend if every time he wanted to talk to me about things that weren’t optimal (rent, a rude text from his ex, grocery bill prices), I just said, “Grow up, baby, there’s bigger problems.” In life, it’s both relevant for me to pay my bills (a small stress) and consider donating to big causes that’ll stop the Amazon rain forest burnings. We’re able to – and all of us *do* – handle both sets of priorities, the big and the little.So why shouldn’t we go about our lives, looking into not only the “big” things we can do, but taking advantage when we can help people with their everyday discomforts, too?I just wish to say this so that none of us continue using the “someone’s doing worse” argument to discount others’ problems. There’s no reason why we can’t respect everyone’s struggles and help out everywhere. Doing our part to make more people comfortable and content is never in vain.
If anyone get frustrated about someone’s vent post again, I hope we all can remember! If the important things in life are Big Issues like world hunger. Maybe we should find ways to not get prioritize our time, effort, emotions, opinions, and investment prioritizing. On one soon-to-be forgotten post. Out of tens of thousands one blogger made. Out of billions. Of posts. From millions of people. On a website. That is used to share furry porn and loss.jpg memes. XD Heeheehee.
About venting on tumblr
When a person is venting, they’re going through a momentary emotional low. That’s not their normal, everyday personality. Lots of people are humble and controlled when discussing the same topics in better mental states. I know I sounded emotional in that post and focused that post on me; that’s the point of venting, though. Bottling up is unhealthy; occasionally talking out what bothers us is useful emotional processing.Even the greatest people have bad days where what they’ve bottled blows up. Are we not allowed to have occasional bad days where we break down? Are we not allowed to talk about our personal feelings because others don’t have the same problem? Does a one-time venting about one issue for one hour make us lifelong selfish whiners?Heck, if Jesus Christ is allowed a moment where he cusses out a fig tree for not having ripe fruit, and billions of people respect his moral teachings, I think we’re ALL allowed moments where we break down and cry over everyday stress. XD
One fascinating issue with social media, especially tumblr, is that our blogs are personal accounts, but followers treat blogs like consumable content. While Maria’s on tumblr to socialize with friends or talk about fandom, her followers want to be entertained by her “product,” her original posts. Unfortunately, this means many bloggers get condemned for being human. They get criticized for everyday reactions everyday humans experience: venting, having a bad day, or making simple mistakes. But this isn’t a professional account of a celebrity who has PR editing posts for public image; these are social accounts of everyday people experiencing life’s ups and downs, who should be allowed to use their personal blog as they will. They’re not cultivated entertainers; they’re creatures socializing online.
Maybe 1% of my posts are emotional venting. I don’t like venting much on tumblr. 100% of those rare vent posts are placed under read mores with tags that make it clear I’m venting. If any of ya’ll don’t want to experience them, you can choose not to click “Read More”. And you’ll never even see what I’m feeling!
Anyway! I’m all chill now! You guys have a great day, stay awesome, and thanks for thinking about the impacts of allergies, intolerances, eating disorders, and autoimmune diseases! I’m very thankful to the people who talked to me when I was struggling last night, listened to me, and suffered through my emotionality. I’m excited to keep talking about dragons and whatever else comes my way on tumblr! Hope we can have fun talking about these things together!
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About my GoFund Me Campaign
Update: 22/09/2019
I am a proud Mummy to beautiful Miss Shyloh-Marie & Future Wife to Craig Daniel Van Oosten, A Rare chronic Illness Warrioress...
Excluding Certain area's of my childhood I feel a need to share with my friends what I could never say. Now 35+ year's on, the monster remains, hauntingly near me. I have battled, struggled & lost because of Eating Issues for the majority of my life. But more recently due to factors beyond my control, the choice to eat has no longer become of my volition. My entire GI system is progressively becoming paralysed. The consequences of this are not clear enough to be treated as they are a direct complication of both severe Anorexia leading me through both Cachexia & at times Sarcopenia & a rare condition called Ehlers Danlos Syndrome. Some no'one have guessed Would have anything to do with either conditions. But why? is this, it's because People perceive what that Will, Little is actually Told of the true insurgient truth's, People Don't take the illness Seriously due To how common or fashionable these illness's had become, apparently.... (that's not saying they don't care), they do, their feelings have been tuned out & their frequency has been muffled by their own pain in life. Eating Disorder's have dated back to when whale bones were used as corsage & before bra's were invented & "Eating" & "Disorder" are a poor use of words as the causes have very little to do with actual "Disordered" Eating & everything to do with accepting who we are which is a symptom of a very deep underlying problems with emotional health that have nothing do with eating at all. But what for me came first, the chicken or the egg???? I’ve spent time donateing my body as a guinea pig so to speak for invaluable research to discover a strong correlation with both GI disorders & Anorexia Nervosa, more research is on the way!
I recently was diagnosed with an umbrella of rare & debilitating illnesses Firstly Ehlers Danlos Syndrome, the types have recently been recategorised to help medical teams distinguish between the symptoms loft better as research is being done wherever it can be afforded. However, unfortunately many beautiful people have lost their fight whilst they have tried to seek appropriate treatment & management for this insidious condition.
I have the rare form of two kinds that crossover, an even rarer occurrence of when Vascular type is seen alongside the most common form of classical. Because collagen makes up at least 85% of our bodies in each systemic function of the body all organs, vessels & connective tissue are in effect "Falling apart" these two words have been said to me by many Dr's & yet at the same time they've said do everything you want to do. Do it now before you age more & subsequently lose more ability. Back when I was born so very little was known of Ehlers Danlos Syndrome, my parents cannot be blamed for not knowing about these conditions. Regardless, they just couldn’t have understood my behavioural reactions to the troubles I kept silent, but that has literally torn our family apart on so many levels, we are estranged & this crushes me in ways my existence could never have been imagined.
I have Dysautonomia which causes Gastroparesis & more recently Intestinal Dysmotility & paralysis, where I'm certain my years of anorexic behaviour, due to dreadful emotional trauma had a huge impact on the manifestations of my health.
haven't helped at all & strange in contrast now is the fact that now I want to live, eat & grow my stomach has given up on me & to do so isn't beneficial.
I can however feel hunger, so it's a form of torture. I've also been in CCU for many smaller scale MI's that have lead to being diagnosed with LongQTsyndrome (Brugada) which is frightening, because it is the same type of sudden Arrythmic death syndrome that sports people have been found to suddenly drop on fields from. Lately other conditions that are linked have been exacerbated by Each other genetically. Once the systems of the body are damaged From Starvation & trauma, they then start affecting the genes. Nervous system Starvation leads To Myeln sheath or epithelial Cells To be destroyed because the Complex fatty acids that protect the Nerves are eaten away Once the mitochondria has digested all available sources of fats in the body this then destroys Brain tissue which is fatty acids From Omega 3 amongst other's. As a result of Being starved/neglected as an infant, I developed Anorexia. As a consequence of Anorexia I now have autoimmune disorders, (Lupus) these flare Inflammatory responses to sugars & proteins making it even more difficult to stay reasonably healthy. Collagen cannot be replaced, restored by re-feeding, as I found out the hard way. Anyone That eats can become unwell, These conditions are extremely rare, estimated around 1/500,000 people will be born without the gene to make their own collagen.
Every living thing must consume to survive Life whether they are young, old, thin, gay, or ethnic background.
Ahhh, so that's done for now...
Regardless of what my physical vehicle in this life causes me though, I feel I'm growing stronger in my soul... I don't hold grudges or allow negativity to stop me chasing my dreams, I love theatre (I miss it) & have many similar media skills, a patent called ZeraphicGraphics© Aspirations to touch as many lives with humanity & unconditional love as possible & travel to spend time with the most inspiring people in the world! I love being where the thrill of art in many forms helps people live. My one dream mentor (of almost 20 years) still inspires me today, even more in recent times when with amazement she was cast in a wonderful show on pay TV.
I chose to not allow my illness to be the main focus though, It's hard with a feeding tube not to feel that this is what people see... I feel often that I'm invisable behind the stripes of these conditions. So escape is rather important in the form of Arts!
Update 5/04/2018
Almost a year ago, after being fed by tubes directly into my intestine (after some proper nutrition) I found out I was expecting my miracle baby, Shyloh-Marie... So many turns, twists & tribulations! But we are all alive, grateful & looking forward. Still being a warrior, being a pin cushion like a pro & trying to make things more visible for those like me in the world... We are currently struggling with bubs sleep pattern, but other than that she is more joy than life itself! I have been able to see my now “friend in the theatre” Pamela Rabe at least twice more since our first meeting in Melbourne & I’ve finally found one of the most important people to me from my Carramar year’s... I cannot believe it’s been over 25 years ago that I was a teen, I am very privileged to be able to say this. Maybe, I will write that book! Maybe it will be a best seller lol....
Sarah-Marie Seraphic-McFarlane (Van Oosten)
My darling fiancé is my rock, we are twin flames, we met in a children’s home for adolescents, we have found each other again as we always had hoped might be possible & if possible, we hoped to have healed in the time apart. In these times precious relationships for Craig, were formed & he had a beautiful son as well to a former partner in our time apart. To such pride he was a wonderful dad but sadly, his sweet first born son passed away from a rare condition known as Menkes Disease. Since we have formed our own little family & are wanting to be married next April, we have a fundraiser to help us, as medical cost are exorbitant with my being on peptide pump feeds for nutrition, medication & treatments for a blood disorder yet to be diagnosed officially.
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pleadthebelly-blog · 6 years ago
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Dear Typhoid Mary,
Listen, Mary, I have a question.
Over the course of at least 30 years, typhoid outbreaks followed you from household to household as you cooked for them and served them your (probably delicious, even with little typhoid bacteria crawling all over it) ice cream. How did you not question even once if there was something else going on? Even after the Health Department told you that you were causing all these outbreaks, how did you keep going and cooking for these people?
Typhoid Mary (born Mary Mallon, September 23, 1869, in Cookstown, County Tyrone, Ireland) emigrated to the United States in 1883/84 at about 15, which, quite frankly, is ridiculous. But aside from that, history doesn’t take much notice of Mary until 1906 when she’s about 37 and working as a cook for Charles Henry Warren in Oyster Bay, New York. Between August 27 and September 3, six of the eleven people in the Warren household got sick with typhoid. Typhoid fever, caused by the bacteria Salmonella typhi, causes a fever of 103–104F, weakness, stomach pain, headache, loss of appetite, headache, constipation or diarrhea, loss of appetite, and in more serious cases, a rash, rose-colored spots, internal bleeding, and death. In the early 1900s, typhoid was still fatal in about 10% of all cases, even with treatment. Untreated, fatality even today is 30%, but don’t worry. There’s a vaccine now. New York sanitary engineer George Soper (sometimes also called George Sober) was sent to the house to find the cause of the outbreak. He ultimately identified Mary as the carrier and found that her Sunday dessert—ice cream with cut fresh peaches frozen in—was the only meal that wasn’t cooked, so the heat couldn’t kill the bacteria. Thus began Soper’s months-long mission of tracking Mary, starting with her previous employment.
•          Mamaroneck, New York (1900): One man ill
•          New York City, New York (1901/02): One woman ill
•          Dark Harbor, Maine (1902): Seven out of a household of nine ill (Mary stayed to help Coleman Drayton care for his ill household. He rewarded her with $50 on top of her wages.)
•          Sands Point, New York (1904): Four of seven servants ill (in a household of eleven)
•          Oyster Bay, New York (1906)
•          Tuxedo Park, New York (1906): One woman ill
Four months after the Oyster Bay incident, Soper approached Mary in the kitchen where she was working and told her he wanted some of her feces, urine, and blood. Which is probably not the greatest way to begin any kind of relationship with anyone. I probably would tell whatever man said that to me exactly where he can stick it. Mary was more straightforward. She grabbed a carving fork. Soper ran.
Soper again approached Mary, this time at the home of a “disreputable looking man” she visited, and Mary denied that she was responsible. She said she’d never even had typhoid and that typhoid was already everywhere so she couldn’t possibly be accused of causing all these outbreaks.
So, since Soper was clearly getting nowhere with all this, he enlisted a handful of other doctors (calling her a “living culture tube and chronic typhoid gem producer”), including Dr. S. Josephine Baker, a woman who had completed her doctor training in the late 1800s/early 1900s and worked in Hell’s Kitchen among low-income mothers to reduce infant mortality. Dr. Baker was both an accomplished doctor and a woman who built her career on knowing how to talk to women. Mary slammed the door in her face.
The next morning, the chase was on. Mary evaded three policemen and several doctors for five hours until she was ultimately caught—betrayed by a bit of her dress—and brought to Willard Parker Hospital. Dr. Baker described the trip as “quite a wild one.” I imagine this said in the driest of voices, but I don’t have any proof of that.
Eventually (after approaching her and asking for bits of her bodily functions, stalking her through the city, siccing the city police and strange doctors, and a traumatic arrest and transportation to somewhere she didn’t know), Soper visited Mary at the hospital and tried to explain to her that she was a carrier of typhoid, even if she didn’t think she was. He offered to help free her from her quarantine, hide her identity, and write a book about her, even giving her all of the royalties, if she would just answer some of his questions. She went into the bathroom, slammed the door behind her, and stayed there until Soper left.
Mary was ultimately quarantined against her will at Riverside Hospital to live for two years in a cottage on North Brother Island. While there, she wrote a letter, first addressed to the New York American, the newspaper that had outed her as Typhoid Mary, but ultimately rerouted to her lawyer. Her lawyer used it as she tried to sue the Department of Health, even going all the way to the Supreme Court, but the judge dismissed the suit after Dr. Park’s testimony that she was still a danger to the community.
The hospital threatened Mary that she would have to stay in quarantine or allow them to remove her gallbladder, which doctors thought may stop her from spreading the disease. Abdominal surgery was incredibly dangerous at the time with a high chance of infection. Understandably, Mary refused.
Just shy of three years since the start of her quarantine, Ernst J. Lederle, the new Health Commissioner of New York, released her. As part of her release, she had to swear never to work as a cook again and to check in with the Health Department every three months. If she obeyed, Lederle promised to help her find employment. While Lederle may have helped her find employment as a laundress—history is somewhat divided on this—he never helped her find employment that could support her financially. Within the first three months, Mary disappeared. But the agencies that placed cooks in wealthy homes now knew what Mary looked like and wouldn’t employ her anywhere, leaving her only able to find work in restaurants, hotels, and hospitals under a variety of aliases.
There were a handful of outbreaks over the next five years that have been loosely traced to Mary, including a sanitarium in Newfoundland, New Jersey. Ultimately, Mary was hired at Sloan Maternity Hospital in Manhattan, New York, as Mary Brown. In her three months there, at least twenty-five doctors, nurses, and staff fell ill with typhoid fever, and two people died. Dr. Cragin at Sloan Maternity called Soper in 1915 with news of the breakout, even joking that some of the servants had named their cook “Typhoid Mary.” Soper identified Mary’s handwriting, and Mary didn’t resist when she was arrested.
Mary was again quarantined on North Brother Island, this time for 23 years. She never tried to escape and was permitted to take trips to the city and work at the hospital, performing basic medical tests that put nobody at risk for catching typhoid. Mary was found on the ground in her cottage on December 25, 1932, having had a stroke. She never walked again and was cared for at Riverside Hospital for the last six years of her life. She maintained until her death that she hadn’t been responsible for any of the outbreaks attributed to her. Only nine people attended her funeral, but none went with her casket to St. Raymond’s Cemetery.
The number of cases Mary has been blamed for varies widely—she may have been the ultimate cause of the typhoid outbreak that caused 3,000 New Yorkers to get ill, but she was directly responsible for somewhere between 51 and 122 illnesses and 3 and 5 deaths.
Nobody ever bothered to explain to Mary what a healthy carrier was, and although the germ theory of medicine was well accepted by the medical community, it was still relatively new to the general public at the time. Today, in part thanks to Typhoid Mary, most everyone knows you can pass on illness while being asymptomatic (lookin’ at you, influenza), but nobody took the time to explain that to her or to the population of New York. While she was quarantined the first time, Mary was vilified in the press. Newspapers referred to her as “crawling with typhoid bugs.” New York American included an image of Mary dropping skulls into a skillet in the 1909 article that outed Mary Mallon as Typhoid Mary, despite Soper’s promise to protect her identity. By the second time Mary was quarantined, there were hundreds of healthy carriers of typhoid in New York alone, and up to 6% of people who have recovered from typhoid can still pass the infection to others.
Now, Mary, I still have a question.
Robert T. Joy in 1994 made a very good point when he said, “Consider that Mallon disappeared for five years, and used several aliases and went straight back to cooking! ... Now, as far as I am concerned, this verges on assault with the possibility of second degree murder. Mallon knows she carries typhoid, knows she should not cook—and does so.”
Directly or indirectly, Mary contributed to at least three fatalities, more if the outbreak that sickened 3,000 can really be attributed to her. She lied, repeatedly, about her identity, lied to the Department of Health, and endangered entire families. She’s even managed to get a Marvel villain named after her (which was a handful of years later, to be fair). But Mary was also an unmarried Irish immigrant in the early 1900s. Mary may have actually liked cooking, which, I think we can all agree, is sort of the ultimate goal in finding a career, and the Department of Health took that away from her without ever taking the time to explain to her why, or providing her with alternate sustainable employment. Most of the other work available to her at the time was more physically taxing than cooking and paid significantly less than cooking for middle-class or upper-middle-class families.
My question for Mary has now turned into a question for the Department of Health and the New York government. Why didn’t they take the time to explain to Mary at the beginning what this meant? Why didn’t they explain to the press what a healthy carrier was? There are so many op-eds in the newspapers these days that surely we could have spared one for the 1900s. Why was Mary, alone out of hundreds of healthy carriers in New York, the only one quarantined for twenty-six of sixty-three years of life? Mary spent almost half her life unhappy and alone on North Brother Island—much of it because of the choices she made after her first quarantine, but which can be traced back other failings that were not her fault. Mary Mallon deserved better than to be known to history as Typhoid Mary, the woman who willingly and negligently put families at risk and, depending on your definition, was responsible for at least three murders.
   Encyclopedia Britannica, Eds., 2018: Typhoid Mary. Encyclopedia Britannica, https://www.britannica.com/biography/Typhoid-Mary. Greenwood, V., 2015: The frightening legacy of Typhoid Mary. Smithsonian Magazine, https://www.smithsonianmag.com/history/the-frightening-legacy-of-typhoid-mary-180954324. Latson, J., 2014: Refusing quarantine: Why Typhoid Mary did it. Time, http://time.com/3563182/typhoid-mary.
Leavitt, J. W., 2004: Typhoid Mary: Villain or victim? Nova, http://www.pbs.org/wgbh/nova/body/typhoid-mary-villain-or-victim.html.
Marineli, F., G. Tsoucalas, M. Karamanou, and G. Androutsos, 2003: Mary Mallon (1869-1938) and the history of typhoid fever. Ann. Gastroenterol., 132–134, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3959940.
Markel, H., 2014: Typhoid Mary’s life sentence in quarantine. PBS, https://www.pbs.org/newshour/nation/typhoid-marys-life-sentence-quarantine.
Smith, K. N., 2017: Who was Typhoid Mary? Forbes, https://www.forbes.com/sites/kionasmith/2017/09/22/who-was-typhoid-mary/#3408c501e3ee.
Tyson, P., 2004: In her own words. PBS, http://www.pbs.org/wgbh/nova/typhoid/letter.html.
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lipszine · 4 years ago
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Black Mamas Matter
Written By Dr. Carol Lynn Curchoe for Lips
The powerful Black Lives Matter movement has brought recognition to the unnecessary use of force on the Black community and extrajudicial murders of countless people. Extrajudicial use of force is not the only way that Black souls are extinguished though. Reproductive and sexual healthcare are in drastic need of an overhaul, for the disproportionate mortality of Black babies and mothers and for the under-treatment of Black infertility.
The United States began tracking infant mortality rate by race in 1850. In over a century since then that gap, instead of shrinking with modern healthcare and sanitation, has actually GROWN.  In 2017, Black newborns had twice the rate of infant mortality compared to the white non-Hispanic population. Black newborn infants die three times as often when taken care of by a white doctor than by a Black doctor. Additionally, Black women are four to five times more likely to die from pregnancy complications than white women. Lastly, married Black women are nearly twice as likely to experience infertility as married white women, but they are treated half as often, and are less likely to achieve pregnancy after in vitro fertilization (IVF), while suffering more severe complications and side effects (like ovarian hyperstimulation syndrome).
In 1850, the reported Black infant-mortality rate was 340 per 1,000; the white rate was 217 per 1,000. Today, in America Black infants are now more than twice as likely to die as white infants. This difference transcends class. A Black woman with an advanced degree is more likely to lose her baby than a white woman with less than an eighth-grade education . In this article we will shed some light on lesser known issues that, to this day, may cause trust issues between the medical community and the Black community. There are many well-known examples of unimaginable trust or consent breaches, such as; the Tuskegee experiments, the story of Henrietta Lacks and HeLa cells, and the Buck vs. Bell decision and sterilization laws that targeted the poor and minorities to name just a few. Those events have been well covered and are beyond the scope of this article to discuss in a way that gives due justice to them.
These disparities (Black infant and maternal mortality, and lack of sexual health and fertility treatments) can start to be unravelled through an historical perspective of the history of gynecological and obstetrical violence and through examination of modern-day implicit biases that are deeply-rooted in society as a result of systemic racism.
The Roots of Structural and Systemic Medical Racism
Scientific racism, sometimes termed biological racism, is the pseudoscientific belief that empirical evidence exists to support or justify racism (racial discrimination), racial inferiority, or racial superiority. We can begin to unravel today’s racial disparity in healthcare by understanding the historical roots of inequity.
In 1851, Dr. Samuel Cartwright published a paper entitled, “Report On The Diseases and Physical Peculiarities Of The Negro race” in The New Orleans Medical and Surgical Journal, a reputable scholarly publication.
The paper’s main thesis was the existence of “drapetomania”, a disease that caused slaves to attempt to flee captivity.  If a slave appeared “sulky and dissatisfied without cause” it was a warning sign of imminent flight. His prescription (let the horror of that sink in…) to stop the disease from fully taking over the slave was, as he writes in his own words, “whipping the devil out of them” as a “preventative measure.” As a remedy for this “disease,” Cartwright made running physically impossible by “prescribing” the removal of both big toes.
He invented a mental illness called “dysaesthesia aethiopica”, which allegedly made Blacks lazy in their work. The treatment of which was “to have the patient well washed with warm water and soap; then, to anoint it all over in oil, and to slap the oil in with a broad leather strap; then to put the patient to some hard kind of work in the sunshine.”
During this same time, a physician named J. Marion Simsdeveloped the surgery to treat fistula, (a hole between the bladder and vagina, or rectum and vagina, that can open as a result of protracted and complicated labor), by performing multiple experimental surgeries on partially clothed, un-anesthetized, and enslaved Black teenage girls.
In his autobiography Sims wrote, "I got three or four more to experiment on, and there was never a time that I could not, at any day, have had a subject for operation. But my operations all failed ... this went on, not for one year, but for two and three, and even four years."
Unlike the careful record keeping (names, ages, identities, etc) of Nazi medical experiment victims during the Holocaust Sims' victims went unnamed, except for three; Anarcha (14-17 years of age), Betsey (age unknown), and Lucy (18 years of age).
Sims became known as the “Father of Gynecology” for his role in developing treatments and devices for gynecology. Today, J. Marion Sims’ actions run egregiously afoul of informed consent in medicine. We consider his actions to be assault and battery. Sims operated on these women without anesthesia partly due to lack of his own training, but because of the cost of providing anesthesia and the commonly held notion (then, as now by the way) that Black women could bear the pain. The surgeries were so gruesome that assisting physicians began refusing to help Sims- i.e. holding the patients down during the surgeries or hearing their cries as they endured repeated operations with no pain management.
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Image Credit: Illustration of Dr. J. Marion Sims with Anarcha by Robert Thom. Courtesy of Southern Illinois University School of Medicine, Pearson Museum.
Cartwright’s edifice of scientific racism and Sims’ horrific legacy of treating fistula on slave children (yes, let’s call them children, they were TEENAGERS) with no anesthesia survives to this day.
The Horrifying Legacy of Obstetric and Gynecological Violence
Black women are four to five times more likely to suffer pregnancy related mortality than white women. This statistic is only partially generated from Blacks having a higher risk of pregnancy complications. The Centers for Disease Control and Prevention (CDC) stated that from 2007-2016, cardiomyopathy, thrombotic pulmonary embolism and hypertensive disorders of pregnancy contributed more towards pregnancy-related mortalities in Black women than in white women. However, carefully conducted studies have shown that Black infant and maternal mortality cannot be fully explained by pre-existing medical conditions, OR by income, weight, maternal vitamins, smoking, drinking, or drug use, or anything else- except that is for stress. The chronic, long term, toxic, unmanageable stress of being Black in America, the very inescapable atmosphere of societal and systemic racism that is cultivated here, leads directly to higher rates of infant and maternal death.
In modern times, women in general, but Black women specifically are routinely undertreated for pain. A 2001 study published in the Journal of Law, Medicine & Ethics found that many doctors (incorrectly) believe that women have a "natural capacity to endure pain" and possess more coping mechanisms for pain than men, presumably due to having to endure childbirth. In 2016, a study by researchers at the University of Virginia researchers found Blacks receive inadequate treatment for pain, but also inadequate treatment relative to World Health Organization guidelines. Inaccurate and racially biased pain management means that whites are more likely than Blacks to be prescribed strong pain medications for the exact same complaints. Black and Hispanic women are less likely than white women to receive epidural analgesia for labor and Black patients with private insurance have the same rate of epidural analgesia as white patients without any insurance at all .  Black women report being repeatedly and roughly questioned for potential drug seeking or abuse behaviour, while simultaneously being ignored and demeaned as “under” or “over” acting in a maddening “damned if you do, damned if you don’t” chess match to have their pain and symptoms validated and treated.
For example, Black women who present with symptoms of endometriosis are often misdiagnosed with pelvic inflammatory disease (PID)—a condition that is sexually transmitted. A doctor can only make an accurate diagnosis of PID through laparoscopic surgery—a procedure that insurance companies consider elective. The decision to move forward with this surgery lies solely with the doctor’s validation of the patient’s complaints of pain. Research on endometriosis in Black women and other women of color is very limited, which further enables racial and gender based stereotypes to dictate medical diagnoses and decisions. Endometriosis can be debilitating; painful periods, bleeding and pain during ovulation, uncomfortable intercourse, heavy bleeding, and chronic pelvic pain. Its impact on quality of life can be devastating. Not only that but it can lead to infertility, when left untreated, as the symptoms multiply and grow for an average delay of 4-11 years to diagnosis, making infertility harder and harder to treat.
Lastly, we come to the undertreatment of Black infertility. One might assume that fewer Black women receiving treatment for infertility implies there are simply fewer Black women with infertility.
But, this is a hasty conclusion.
It is definitely not that simple.
There are various explanations provided for the mistreatment of infertile people of color (POC). There are often misperceptions of POC being hyper-fertile or being unfit to be mothers . The trope of the “welfare queen” comes to mind as a strong visual, perpetrated by the media. A plump, lobster-eating, Cadillac driving, well dressed, Black or brown hyper-fertile woman, who has child after child to maintain the government handout.
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Image Credit: Steve Brodner
Not only do historical racial inequities in medicine lead to inaccurate diagnoses, but there is also societal pressures and shame that result in a Black woman remaining silent about infertility struggles.
It is not simply the societal views on Black infertility that are problematic, it’s the greater need for investment in research and resources and the need to focus on racial disparity in assisted reproduction technology (ART) outcomes. There is a marked, and unacceptable, difference in the outcomes after fertility treatment between populations:
The ART failure rate (no live birth after treatment) is 51.9% (white), 61.8% (Asian), 62.2% (Black) and 55.9% (Hispanic).
ART stillbirths are 16.3% (white), 18.4 (Asian), 25.0% (Black) and 17.8 (Hispanic)
Tubal factor infertility diagnoses are 18.5% white women, 41.7% (non-Hispanic) Black women, 27.3% Hispanic women, and 17.0% Asian or Pacific Islander women.
The reasons these disparities exist include genetics, income, health insurance and maternal stress. However, there is a  lack of outreach regarding accessible educational, counselling, and support resources to minority communities. Resources and education are what enable people to direct their sexual health and infertility care. Racial inequality and social stigma strip people of the power to do so. Historical stereotypes continue to stubbornly prevail and prohibit Black women from receiving the infertility healthcare and resources they require.
A study conducted by Ann V. Bell sheds some light on the subtle inequalities that play a role in treating infertility. Bell interviewed 27 women of low socioeconomic status. 10 participants were Black, 2 were Latina and 1 was Asian. The findings of her research were disturbing and demonstrate how ethnic communities do not have pleasant, welcoming, and helpful doctor visits. For example, one 33 year old Black woman interviewed by Bell recounted her experience after suffering a miscarriage:
“They—they just—they just seem like they just didn’t want me to have any kids (laughs) at all. At all. And that was sad. They, you know, they scared me into even trying to have any more. They tried—they tried to get me not to even have any more […] They was really scaring me. That’s why I—I said, ‘Oh (laughs). Never again, Holy Grace Hospital. Never again’. Because they scared me and it was just—just crazy.”
We interviewed the founder of the Fibroid Pandemic, LaToya Dwight, BBA,MSM,RHU, ChCC, REBC. The Fibroid Pandemic is a support group for women with fibroids (especially for POC, who get little support). When Ms. Dwigh’s white doctor diagnosed her fibroids, they immediately prescribed a hysterectomy (removal of the uterus). Obviously, that is a huge, life changing decision, yet, despite the gravity of it, the treatment plan was handed down cavalierly with no mutual discussion or consent, and no discussion of alternate, fertility preserving options. She changed physicians (to a Black doctor) and discovered that there are other, less-severe options; diet and lifestyle changes and embolization, among others.
Not even fame and wealth can prevent Black women from experiencing these inequalities. Celebrities like Gabrielle Union and Serena Williams have publicly shared their infertility and post-birth near death experiences. Gabrielle Union struggled with heavy periods, pain, and infertility for years, before one doctor took her symptoms seriously and finally, properly diagnosed her adenomyosis. Prior to that, every doctor simply dismissed her concerns and put her on birth control pills. After giving birth, Serena Williams suffered a life-threatening blood clot in her lungs after giving birth to her son. Unfortunately, at first the medical staff did not believe her, but eventually a CT scan proved her right–she had a pulmonary embolism and several small blood clots had traveled to her lungs.
The above mentioned inequalities are appalling alone, however, the picture gets bleaker still for Black newborns. Black newborns are more likely to survive in hospital if taken care by Black doctors. This was unequivocally demonstrated by an analysis of 1.8 million hospital births in Florida between 1992-2015.  In 2017 the CDC data also backs up the fact that Black newborns have twice the rate of infant mortality compared to white non-Hispanics. Neonatal mortality rate is the highest among Black non-Hispanic newborns.  Black newborn lives matter. Black infertility matters. Black mamas matter.
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Image Credit: Unknown. We reached out to Black Twitter and could not identify the source of this powerful image. You can reach us at [email protected] to properly attribute this image.
Conclusions
Regardless of whether it is conscious or unconscious racism, the stories presented here establish that reproductive healthcare settings are deadly environments for the Black community.  If there was not even one racist doctor or healthcare practitioner, systemic racism would still exist. The reproductive healthcare system must be re-structured to reduce structural inequalities in diagnosis and treatment of infertility,  and to eradicate systemic, and deadly racism.
About the Author
Dr. Carol Lynn Curchoe, TS (ABB) is a reproductive physiologist. She is the founder of ART Compass, (artcompass.io) a mobile application platform for IVF cycle management, a Fertility Guidance Technology (www.fertilityguidancetechnologies.com). She is the author of The Thin Pink Line (2021), Nova Science publishers.
The Thin Pink Line is a critical examination of health disparities in various aspects of reproduction. We will explore historical perspectives and controversial topics in modern gynecology from birth control to sterilization, to episiotomies and the “husband stitch,” to “educational” pelvic exams, shackling laboring convicts, gender affirming surgery, human embryo research, assisted reproduction and more. This article was written with assistance from Pooja Kasarapu, ART Compass content manager.
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