#chronic pain stigma

[chronicsymptomsyndrome]

Can we go ahead and normalize medicine? Taking pills in front of people? Taking pills in public and not getting weird looks? Using alternative medicines or anything other than pills and not being treated like a novelty? Fucking please because first of all literally everyone takes medicine of some kind at some point in life okay and second of all people need medicine to live it’s a thing it’s pretty common and people need to be in public for a lot of reasons actually so can we please

[babypenguinz]

observations from someone who went from invisibly to visibly disabled

around a year ago, i noticed i was having a lot of trouble standing in lines and walking for extended periods, i needed to sit down frequently and was experiencing lightheadedness, chest pain, and just generally feeling like shit after the lightest cardio. i suffer from a variety of diagnosed chronic health issues, as well as symptoms still under investigation, but i was nervous that if i started using a mobility aid, people would be more judgmental towards me while i was out and about in public, especially as someone in my early 20's. instead, my experience has been the opposite.

before i started using a cane, people would see me struggling in public, red-faced and exhausted, and look at me like i was nuisance or had done something wrong. cars would honk at me for not crossing the road fast enough, i'd regularly have to jump back from the road after a driver ignored me trying to cross. since i started using a mobility aid, this has turned to doors being held open for me, drivers signalling that i can cross when they have a green light, and being asked if need help by strangers.

while using a mobility aid has helped my stamina and made it easier to get about physically, the social impact has been far more noticeable to me. without a mobility aid, there was a lot of room for strangers to make their own assumptions about me. i could have been drunk, or high, or in withdrawal, things for which it's socially acceptable to judge someone negatively. with a mobility aid, it becomes clear why i'm struggling.

there's a conversation to be had about the perceived helplessness of being visibly disabled, sometimes people can be intrusive or overbearing, but at the same time it comes with an assumption of innocence and virtue that, while potentially patronising, makes it easier to navigate the world without being judged as anti-social.

for anyone who's been struggling with declining physical ability and considering using a mobility aid, i'd highly recommend taking the leap. not only because you deserve the freedom of being able to participate in society, but because people are far more accommodating of your struggles when there's a visual cue that alters how they perceive you. you can always stop using it if you find it doesn't work for you, but you don't know how beneficial it could be until you've tried it for yourself.

[cupcakes-n-rainbows]

Using mobility aids is not "setting myself up to fail in my own fantasy." I am not giving in or giving up.

When I say I don't ever see myself without my wheelchair, I'm not giving up. I'm looking up at the future with sparkles in my eyes, watching it all unfold on the movie screen in my mind. And in that future? I'm disabled. I use a wheelchair. I have paralysis. I need help. And in that future? It's beautiful and it's amazing and it's fun, and it isn't hampered or dampened or lessened in worth by four wheels instead of two feet. It's just my future. Yes, it's different than that of an able-bodied person, but everyone's future is different, wheels or not. The help I need and my form of mobility doesn't make my life or my future any less wonderful.

Please, hear me and know me and understand me. Please, listen and truly take it to heart when I tell you that this is my future and this is my life. Not the hope you had for me when I was seven or how I danced when I was ten. That naive child left years ago, locked somewhere within the depths of my mind. She won't be back. I'm not her anymore. I'm not the same as I was, and I never will be.

My story isn't a tragedy. I'm not "too young". I'm not "too smart". I'm not throwing away my "bright future". This is my bright future. This is me, through and through and up and down, forwards and backwards and right and wrong.

Please. Let me live on my wheels rather than die on my feet. It's all I ask.

[violet-phoenix-nebula]

Stigma and illness

"We do not want to reckon with a world that is merely unfair; where some people get sick, not because they did something wrong but because the world is unjust, and insofar as it is just, it's random.

"And so, we tell ourselves we understand, which too often means creating explanations that blame the sufferer. Stigma is a way of saying 'you deserved this to happen', but implied within the stigma is also 'and I don't deserve it, and so I don't need to worry about it happening to me'.

"Stigma can become a kind of double burden for the sick. In addition to living with the physical and psychological challenges of illness there's the additional challenge of having their humanity discounted. Think of the word universally used in English to describe Tuberculosis patients in the 18th and 19th centuries. They were called 'invalids'. They were literally invalid.

"People living with TB today have told me that fighting the disease was hard, but fighting the stigma of their communities was even harder."

...

"Finally, the origin, or perceived origin of a disease also matters. If an illness is seen to be the result of choice it is much more likely to be stigmatized.

"So for instance, people with major depression are often told to just 'choose to be happier' just as those with substance abuse disorders are told to just 'choose to quit drinking'. And some cancers and heart diseases are stigmatized for resulting from purported choice as well.

"Of course, this is not how biology works. Illness has no moral compass, it does not punish the evil and reward the good, it doesn't know about evil and good. But we want life to be a story that makes sense, which is why, for example, it was commonly believed up until the middle of the 20th century that cancer was caused by things like social isolation, parents were actually told their kids got leukemia because they hadn't been adequately loved as infants.

"If a clear cause and effect isn't present, we will invent one, even if it's cruel."

John Green - The Deadliest Infectious Disease of All Time

[enbycrip]

I am noticing a very serious and sustained media assault on people needing prescription drugs recently.

Panorama has attacked pain management drugs, ADHD diagnoses that could potentially lead to the NHS prescribing drugs to manage that, and now antidepressants. The same antidepressants pain management services are trying to claim are a replacement for pain management drugs btw. (They’re not. I take both.)

Given how much the Beeb are in the Tories’ pocket, this basically feels like a way of trying to shift the narrative about a disintegrating NHS (destroyed by Tory policies) into “you don’t actually need these anyway”. I.e. once again trying to victim blame sick and disabled people.

And the truly shittiest thing is that this will kill people. There’s still *so* much stigma around mental health and medication. People will flush their own drugs. People will flush the drugs of people they are caring for. And then people will have MH crises there is no capacity for the NHS to handle, and people will die.

[iplaywithstring]

I work at a residential facility for people who need support due to mental health concerns. Every resident is on some sort of regular medication. Occasionally, someone will make a self-deprecating comment about having to take meds, and seem so surprised when I commiserate.

I'm on 2 daily meds (and just had to pause to consider if I had taken them this morning...I did...go me), plus various PRNs, and I would not be able to work without my medications. I know for a fact at least 3 of the staff have mental health diagnosis, and who knows who else is living with any other health concerns, medicated or not.

The point is, there is no need to be ashamed of taking meds. It's unfair to yourself to think you're less than others because of it. You have no idea of who is taking what and why and how they'd go through life if they didn't have it. We live in a wonderful time when medications exist to help cope with symptoms and sometimes make debilitating conditions easier to live with. This should not be stigmatized any more than needing glasses.

[spookietrex]

I hate when someone pops up on your post when you're ranting about YOUR medical need/issue and tell you your perspective is dumb because of their experience. If I want to post that I ended up in the ER because my doctors f*cked up my medication and now I'm having withdrawal side effects because they all want someone else to prescribe it, that's on me. But it doesn't give someone the right to tell me "That medication was bad for me. You should tell your doctor to get off of it." Or "You should fire your doctors." I was b*tching about how it's sh*tty that I had to go to the ER because my doctors let my withdrawal side effects start and wouldn't represcribe the medication and made me cry.

[lifewithchronicpain]

This past December, a woman named Jessica Fujimaki died of complications from opioid withdrawal. Her doctor was suspended by the DEA for helping pain patients and she was unable to find another doctor to prescribe her opioids before the lack of adequate and necessary medication killed her. This is a fundamental example of why pain kills.

She is not the first. She will not be the last. Whether it’s suicide from lack of sufficient pain relief; overdose from using illicit opioids unknowingly laced with fentanyl; or death from complications due to withdrawal like Jessica Fujimaki — pain patients are dying. People continue to discuss overdose deaths from addiction, as they should, but the plight of the chronic pain community is overlooked so that only addiction related deaths are covered in the news.

How can so many people be dying and it doesn’t make the news? For starters, because of the nature of our condition we often have no energy to properly advocate for ourselves. I have tried to advocate for myself, but even what little I can do is so damn hard. The fact I can’t even post more here is just one example of this struggle. (Read more at link)

[demonized-infodumps]

I’ve recently gotten told about what could be wrong with me, and one of the things requires using a mobility aid.

My partner is wanting to go ahead and get a mobility aid for me but I’m afraid of how much stigma there is about those already paired on top of us being a system with demonized pds (npd, hpd, & bpd).

I’m afraid that we’ll be going out one day and I’ve already promised to ease their worries that I’ll use it or have it with me as a just in case and someone will see the opportunity to take it from me as a means of “joking.”

And I’m afraid that our chronic pain will flare and will make it to where we can’t walk for minutes to hours on end and be stranded. Or have to be carried through the entire park.

I’m trying to prepare myself for the dirty looks I’ll get or people coming up to me or mocking me while we’re trying to have a fun day, but I know it’ll still be harmful to see in person.

I wish there was less stigmatization and demonization of people using a mobility aid to help them. I wish I didn’t have to have the worry of having it taken from me or being mocked/laughed at just for living. I want to be able to do things.

That and then being babied and told to rest constantly makes me feel completely useless and upset. I can still do things for myself. Just because I’m having to use an aid doesn’t mean I’m instantly just not able to fend for myself.

Though, I appreciate people opening doors for me. That’s a gesture I enjoy having.

.

[lacefuneral]

thing that sucks about fibromyalgia is that it really only started to be taken seriously by doctors the last couple of years so there isn't much information about what treatments are effective and what aren't

so a lot of people lean into like. pseudo science bc they think it will fix their pain

which is frustrating because it's like. i want to know what is actually helping people. not some anti-vax person covering themselves in arnica montana (which is a poison at best and absolutely nothing at worse, which is the case of homeopathy) and guzzling laxatives (i shouldn't have to explain why is this an issue)

the scary thing too is seeing ppl on reddit say "no yeah my doctor just mixes me a special lotion with opiods and ketamine and gabapentin" or people saying they're taking all of these medications orally. ARE YOU INSANE.

other people are like "ya my routine is simple!" and then lists no less than 10 very expensive supplements

like. okay. i do take some supplements. i am intending on trying another. but like..... can we get some actual medical professionals running trials on fibro that don't rely on extremely addictive drugs? y'know, during a fucking opioid crisis. and stop having doctors shrug at their patients and say "idk maybe go for a swim? get stabbed with needles?"

[hikeyzz]

i'm not even gonna lie getting surgery reaaalllyyy brought out the ableism of everyone around me. people really think i can just will my body to heal faster and are pretty shocked to hear i haven't just woken up completely healed yet (it hasn't even been 72hrs since my surgery...). or they get suuuperrr uncomfortable seeing/knowing i'm in pain and there is nothing that will make the pain completely go away. it makes everyone squirm that i'm being honest and keep saying i am in pain and uncomfortable. all that's really needed is an acknowledgement, you don't have to go over the top "poor baby," but you also shouldn't cringe away and just say "i hate that you're in pain." none of us LIKE seeing our loved ones struggling or in pain or ill. BUT it's a very, very normal part of life. and to say you hate that someone is in pain makes the pain about YOU and YOUR discomfort, not the person who is actually experiencing the pain. now i have to console YOU that i'm going to be okay bc you let your emotions dominate your reaction to MY experience.

[crippled-native]

I know it’s shitty out here tryna find resources for NPD that aren’t ableist but I found these 2! I was researching to make a video response to a really ableist comment I got about pwNPD.

[crps-chronicpain-ptsd]

“The inconvenient truth is that #ChronicPain is never-ending…and when we receive unsolicited health advice on how to cope, it makes it even harder. #Patients who live with chronic pain live with pain that endures…for months, years, decades…lifetimes.”

Chronic pain problems •

[emsleyanbluejay]

it’s depressing how often the response to having a disabled OC is still “I want disabled characters, but not like that” when you pretty much literally put your own illnesses onto the OC in question

[davestone13-blog]

Breaking Stigma: Open Conversations About Suicide

I have always considered suicide a personal choice, one not to be judged by anyone, but I’ve never understood it. Personal choices are always complex, I know, but why would anyone want to wipe their physical identify off the face of the Earth, sever every connection, good or bad? I did some research. by David Stone The Roosevelt Island Daily News Suicide: A Complicated Personal Choice Friends…

[remyxavierr]

I didn't know this was even a thing until yesterday, which was the first day of Disability Pride Month! I get to celebrate a second pride month, and I'm very excited to do so and to share my experiences with disability and others' experiences as well!

This month I am celebrating myself, as someone with two chronic disabilities: bipolar 1 disorder, and chronic migraines.

I was diagnosed with bipolar 1 in 2016 after a failed suicide attempt. I had experienced the effects of my bipolar since I was a pre-teen, but back then I didn't know what was wrong with me and neither did my family. I experienced my first bout of psychosis at 17, and then my second bout of it at 23. I did not start taking medication for it until after I left the US, moved to Canada and became a permanent resident, which was the year 2020 (so I've been medicated for 4 years, woo!) at which I was 29 years old. I started therapy for the first time last month. I have struggled with alcoholism, cocaine addiction, and sex addiction because of my bipolar disorder, but have been clean since moving to Canada in 2018. It has been incredibly difficult to talk about my experiences with bipolar and psychosis to both family and friends because both are wrongly associated with dangerous people. I always take any opportunity to educate those around me about bipolar and psychosis so that one day there won't exist such a strong stigma against them. It has been an uphill battle, but I continue to fight for both the acceptance of my peers and family, but also my own acceptance as well because the shame and guilt that comes with mental illness is quite heavy.

I developed chronic migraines in 2020. By that point I had only had a migraine once in my life, when I was 19, but I knew my mother had struggled with chronic migraines my whole life and I was also aware that migraines were a comorbidity of bipolar. When the migraines started, I assumed they would end after a day or two, 3 days max, just like my mother's did, but I wasn't so lucky. I experienced a migraine every day for 8 months. My family doctor referred me to a neurologist pretty early on and I had tried about 3 medications with no luck. It was very hard, for both me and my wife, as she had to live very quietly at all times for 8 months, in a house that had to remain darkened constantly. Eventually I began a new medication and after almost 2 weeks, I had a break in my migraines. Then after a month, my migraines finally came to an end, for the time being. It was like seeing colour for the first time, or feeling sunlight on your skin after being in a bunker for almost a year. I stayed on the medication for a year, but as it is not a long-term medication, I had to eventually come off of it. After a year of no medication, the migraines came back, though less frequently, this time only 1-2 a week. Still bad. I was put back on the medicine and I will remain on the medicine for the next 1.5 years, and then I will have to come off again for a year. My only other option is Botox, but unfortunately that is just not something I can afford to do every 3 months for the rest of my life, so I guess we'll see how this goes.

It's very hard to have invisible disabilities, let alone a disability at all. People always want you to prove how disabled you are, which is so asinine. I also feel like it's a culmination of battles, whenever you have a disability: a battle to be understood by your family and friends, a battle to forgive yourself, a battle to fight the stigma you see across the internet and media, and a battle to be believed by medical professionals. It's all very tiring, frustrating, and, at times, it feels very hopeless. But I'm grateful that this pride month exists so that we can have open discussions about disability and all the flavours of it that exist.