#I know I should be treating the symptoms and not worry about the diagnoses but WHY DO YOU ALL DISAGREE WITH EACH OTHER SO MUCH

[fingertipsmp3]

Btw I’ve never talked to an actual medical doctor about my mental health issues so I have no idea how to go about it. Lol

[roliepolie]

Doctor 1: You are not mentally ill.

Doctor 2: No. You have depression.

Therapist 1: No. you have major depression, gad, and ocd tendencies.

Psychiatrist: No. You have major depression and bpd.

Therapist 2: No. You have ocd, major depression, and suicidal tendencies

Therapist 3: No. You have ocd, pmdd, and bpd tendencies

Doctor 3: No. You have some type of cluster B disorder, probably bpd.

Me:

[foone]

on "that sounds like me, do I have ADHD?"

So a thing about ADHD (and probably all mental illnesses, but especially ADHD) is that it doesn't really have any hyper-specific symptoms. Like, it's not like you get ADHD and your elbow turns green, which only happens with ADHD.

ADHD describes a bunch of symptoms, some with shared origins, some which might have different origins, but the important thing to remember is that you can have all those symptoms for reasons other than ADHD.

Time blindness? it can happen to anyone because you got caught up in something. being unable to sit still? it can be caused by any number of physical (and mental!) things, not just ADHD. unable to concentrate? that can happen because of chronic pain, depression, brain fogginess, etc.

So the important thing to remember is that if you see someone (like me) ranting about their ADHD experience, if you identify with that situation, it doesn't necessarily mean you have ADHD.

You might have depression (monopolar or bipolar). or be autistic. or some forms of OCD. or have chronic pain.

Now, by all means, go to a doctor, talk about these symptoms, get tested, get medicated, get therapy, whatever! I'm just saying that you shouldn't jump to ADHD as a definite diagnosis.

ADHD is definitely one of those diagnosis where we drew a circle around some symptoms and said "this is ADHD", if there's no other reason to have those symptoms. Like, if you take a person and keep them awake for 36 hours and feed them a ton of coffee they'll probably act very "ADHD", but it doesn't really mean you need to put them on adderal, even if they're showing a lot of the symptoms of ADHD. You should look for other solutions to their problem, like letting them get some sleep and cutting the caffeine.

And the same is true with ADHD. All the symptoms of ADHD are things that you can have for a bunch of other reasons, many of which can be treated (and treated better!) in other ways.

Depression is a good example: Depressed people can have executive dysfunction issues, trouble concentrating, poor planning, difficulty in finishing things. Would giving them stimulants (like Adderal and Ritalin) help? Maybe somewhat... but it wouldn't help the underlying depression problem! Getting therapy and antidepressants is likely going to be much more effective, since you're treating the condition that is causing the ADHD symptoms. (and if those symptoms don't go away when the depression is cured/managed, maybe they also need stimulants!).

ANYWAY to sum up: Don't worry too much if you see someone with ADHD complaining about something that they do because of ADHD and you go "that's just like me". ADHD isn't that kind of condition, just because you have one or several of the symptoms doesn't mean you have it, you could easily have something else that causes the same or similar symptoms.

And finally: This isn't meant as a thinly-veiled "don't self-diagnose" rant. You go ahead and self-diagnose all you want. I'm just saying that you should consider other possibilities before ADHD, because it may be more effective and easier to treat those conditions than to treat ADHD. (And I say that whether you're self-diagnosing or talking to a doctor: Hopefully your doctor is well-informed enough to know there is a lot of overlap between symptoms, and will ask about other possibilities )

[etrsilk]

Hellooooo can I please have headcanons of the main 4 with a sick reader? I really want some comfort because my head and stomache hurts 😭

₊✩‧₊˚ ᡣ𐭩 𝐌𝐀𝐈𝐍 𝐅𝐎𝐔𝐑 ⇝ 𝐭𝐡𝐞𝐦 𝐰𝐢𝐭𝐡 𝐚 𝐬𝐢𝐜𝐤 𝐫𝐞𝐚𝐝𝐞𝐫 .ᐟ

˗ˏˋ ➛ 𝙞𝙣𝙘𝙡𝙪𝙙𝙚𝙨: 𝘒𝘪𝘭𝘭𝘶𝘢,𝘎𝘰𝘯,𝘒𝘶𝘳𝘢𝘱𝘪𝘬𝘢,𝘓𝘦𝘰𝘭𝘪𝘰

˗ˏˋ ➛ 𝙬𝙖𝙧𝙣𝙞𝙣𝙜 — ✘

˗ˏˋ ➛ 𝙜𝙚𝙣𝙧𝙚 — 𝘧𝘭𝘶𝘧𝘧

⎝ 𝙣𝙤𝙩𝙚:: hello! Yes of course ! ♡ By the way, you have all my support! I hope you'll be better !! ദ്ദി ˉ͈̀꒳ˉ͈́ )✧

 —𝐊𝐈𝐋𝐋𝐔𝐀ꫂ ၴႅၴ

➘ This guy doesn't really empathize with you at first because he's only been sick very, very rarely in his life!

➘ But alongside your cold, you developed a very high fever that kept you bedridden, and that's when he began to worry about you

➘ His first instinct? Call Leorio!!!

➘ He listened very carefully to all his advice, and applied absolutely all of it!

➘ He takes it very seriously, and if you don't want to take one of the medications he will chase you around until you take it...

➘ He won't stop making jokes like "oh no, you touched me yuck I'm going to be sick" (10 minutes later he'll cuddle and kiss you because he can't be without your physical affection for more than 20 minutes)

➘ He was the most worried of the two of you, you were just like "bro it's just a cough" and he was like "what if it turns into Chronic Bronchitis???? Or what if it's a symptom of the Tuberculosis???"

“IT’S JUST A COUGH AND A LITTLE FEVER”

 —𝐊𝐔𝐑𝐀𝐏𝐈𝐊𝐀ꫂ ၴႅၴ

➘ You don't want to admit that you're sick, not at all out of pride, but because you absolutely don't want to worry him.

➘ You know that with his work, he is very stressed and busy so you didn't want to make his stress worse or disturb him. So you simply didn't tell him anything about your state of health and you tried to look as normal as possible.

➘ but one day you passed out in the kitchen

➘ The doctor diagnoses you with some sort of infection and prescribes lots of medications and instructions to follow!

➘ Kurapika gives you a moral lesson for hiding your poor state of health from him by saying that in a relationship you had to say everything and that we went through everything together and bla-bla-bla

➘ While you're healing, he becomes a little overprotective and refuses to let you exert yourself unnecessarily until you're fully recovered

➘ He stays with you as much as possible and cuddles and kisses you a lot to comfort you !!

 —𝐆𝐎𝐍ꫂ ၴႅၴ

➘ He feels a little lost and doesn't really know how to comfort you or help you get better.

➘ If he notices that your condition is really starting to get worse, he will call Leorio for advice and Leorio will obviously help him as best he can as a good dad friend!

➘ Gon would make you rest and take care of all the household chores. He would also bring you blankets and sweets, and together, you would spend your days and evenings watching movies, completely wrapped around each other like Legos.

it's so cute…

(He got sick shortly after and it was Leorio who had to take care of you two)

 —𝐋𝐄𝐎𝐑𝐈𝐎ꫂ ၴႅၴ

➘ He is very very very slightly happy because he finally has the opportunity to show you these doctor skills…

➘ But otherwise, obviously try to help yourself as best you can.

➘ It makes sure you have everything you need, from nutritious meals to medications to a clean, comfortable environment.

➘ He tries to comfort you by making you laugh with jokes!

"Leorio, I think I should see a doctor."

"Who are you talking to right now? Who is it you think you see? Do you know how many people I treat in a year? I mean, even if I told you, you wouldn’t believe it. Do you know what would happen if I suddenly decided to stop going to work? A clinic big enough that it could be listed on the NASDAQ goes belly up. Disappears. It ceases to exist without me. No, you clearly don’t know who you’re talking to, so let me clue you in. I am not in need of a doctor, my dear. I am the doctor. A guy feels a bit off and gets told to see a doctor and you think that of me? No. I am the one who diagnoses!"

(It was much funnier in my head)

—English is not my first language, so sorry for any mistakes!!

[koolades-world]

Hi hi! Just wanted to start off by saying I love your work ╰(*´︶`*)╯♡

Anyways I was wondering if you could do some comfort hcs for an mc that has IBD? You’re fine if you don’t want to write for this since it’s pretty uncommon from my understanding.

Note: I felt it important to say since there’s lots of misconceptions floating around (cough cough TikTok-)that IBD has lots to do with diet. Either it playing a role in the cause or for treating it. Which all the specialists I’ve seen have said diet is neither the leading cause nor is it the solution. All it is that some foods irritate for no particular reason and should generally be avoided.

Sorry if I overshared lol I’ve just had people tell on multiple occasions that it’s a diet thing when it’s not- it’s an autoimmune disease.

Thanks so much for reading my little impromptu rant. Again you don’t have to write for it if don’t wish to due to it being a very niche topic. Anyways hope you’re well stay safe.

-🪴🧺

hi!!! of course I can! no worries about oversharing or anything, i actually didn't know that was a misconception and help me out :)

i'm almost certain i have ibs (long story short i couldn't get diagnosed but it runs a very clear path in my family and all of my symptoms match up exactly the same it's like it was copy and pasted) and of course so i could properly write this i did a little research, and based on what you said and what i read, it sounds like people are getting the two mixed up which is something that could be fixed by a simple google search :( i'm so sorry you have to deal with people like that

i hope i did you justice and this could be a little respite in your day. enjoy <3

Mc with IBD

Lucifer

he tries his best to make your days better in little ways!

gift baskets will randomly appear in your room filled with things you'd only mentioned in passing that you wanted or needed to him

if you're feeling up for it, he'll take you out for a meal at least once a week to make you feel special. it might not be fancy every time, but you can still feel the love

if you're not though, no worries! he'll do something equally as nice at home for you with food he made himself

Mammon

if you need surgery, he's becoming your personal nurse while you heal!

every moment he can be, he's by your side

lots of cute little forehead kisses and magically producing your favorite candies from behind his back for you

you won't even have to lift a finger to change what you're watching on tv, let mammon take care of it <3

Levi

he's the king of staying in, so if you don't feel like going out, his room is always open to you!

you don't even need a password to get in, because it's you

if you're ever feeling down or unwell because of your ibd, he always lets you have full control over what you do

if you play a game like minecraft together, he'll always have surprises ready for you so next time you play, you'll find it <3

Satan

he's curious about your medication and does extensive research into it

he always makes sure any painkillers or other meds you might take won't interfere with your ibd meds!

he will recommend the over the counter painkillers if you want them that have the least amount of bad side effects, such as tylenol because he hates to see you in pain

he's got lots of connections and will use them in any way possible if it could possible help you

Asmo

he's the best at making sure you take good care of yourself!

if you're bad about taking your meds, he'll get you a cute little pill divider

will also get a matching equally cute water bottle that you can use to help take the pills

he ensure everything can be done while being fashionable, because he finds that it makes things more bearable for him, so why not his favorite person too?

Beel

he knows quite a lot about supplements and vitamins, so if you take them, he's asking you questions about them because he just wants to get to know you better

he is always there for you if you need someone to talk to, or just want to rant/vent

provides the best comfort and warm hugs :)

Belphie

like his twin, he also gives great hugs

he's your number one fan of course! he's always with you even if you're not in your bed

it may take all of his energy, but if you want to go out, he's going with you no matter what

he'll even share his signature cow pillow with you 🥺

[actuallyadhd]

hi, sorry in advance if this isn't the kind of thing you are open to getting in your inbox, but i just don't know what to do with my feelings. i really hate my adhd. i spent my youth cruising through school and high achiever programs, being told i was going places, and nowadays i am nothing short of completely useless. i'm early in diagnosis to where i'm just starting with medication (15mg of ritalin twice a day at this stage) and haven't effects yet. it's already clear that the dose i'm going to need will be embarrassingly high.

ever since i told my friends, it's obvious that the diagnosis came out of left field for them and that they see me differently. i keep catching them giving me sympathetic looks after zoning out, fiddling with something, or presenting some other stereotypical symptom. i tried mentioning to them how i'm not getting results out of meds yet as a means of whinging since it is making me anxious and a little impatient, and their response was completely uninformed medical advice about how i should be taking them. they're also all talking about how they all probably have adhd too since we 'tend to glom together'. they're all straight-A students with no symptoms or functional issues, so i find this a little condescending. i might be imagining how they've starting talking down to me/talking slower. the diagnosis made me feel stupid enough without them acting like this, and now i just feel like a human joke.

i don't really know what the point of what i'm writing is anymore, but i'm struggling to get any assignments in, failing all my tests, my friends treat me different, my parents are unabashedly disappointed, the meds are taking too long to work, i'm lazy, dysfunctional, getting dumber every day, and my head is too fucking loud to keep living in.

i'm sick of how trying to have a thought feels like being a sentient pile of spaghetti wading through tar, and of not being able to read if my brain decides a particular paragraph is not to its liking, of not remembering anything, of struggling and not even being able to remember and articulate what with, and all the other bullshit. i probably just have to wait this out while we figure out meds, but i'm sorry for using this inbox to vent because i think that's what i'm doing as i can't really go to my friends. feel absolutely no pressure to respond, i might have just needed to wright this down and see it sent off somewhere. any advice is welcome if you have it though, lol.

Sent August 16, 2024

Oof, I'm so sorry you're feeling this way. There's a lot here, so I'm going to try and go through it a bit at a time and tackle everything as I go.

First, this is absolutely the kind of thing I'm here to try and help with. No worries at all on that.

Second, this is a long one, so I'm putting in a cut.

I understand hating your ADHD. You feel how you feel, and that's okay. Reaching out for help is a fantastic way to deal with those emotions.

It sounds like you were a gifted student, and now that you have less of a schedule being imposed on you, you're struggling. That is totally normal, but it also sucks a lot.

You aren't "achieving your potential" or meeting expectations, and at this point they aren't just others' expectations, they're your own. I spent several months working through this issue years ago, and it still comes up for me regularly! The friend who walked me through it was incredibly patient with me, and their job in this case seemed to mainly consist of "why do you think you need to do this thing?" and then just continually asking why until we got to the bottom of it all.

Once you know what's at the base of the expectations, you're in a way better position to decide whether they're expectations you want to try to meet.

One of the good things about getting diagnosed is that it gives you information. Now you know why things are hard, and you can start looking for solutions that will actually work with your brain. You may find some of those solutions here, and you can always ask for help with specific issues.

Now, it's possible that Ritalin/methylphenidate isn't the right medication for you. It is also possible that the dose is too low; I don't know a lot about doses for Ritalin (I was initially put on Concerta but it was Very Bad so we switched to Dexedrine/amphetamine) but I used to know someone who took 150mg Ritalin every day, so that's a thing.

As for your friends, talk to them about how they're acting. Tell them that you don't appreciate the jokes or the different treatment. Explain that ADHD has been there all along, it just wasn't discovered earlier because your giftedness hid it. You are not a different person.

Having ADHD doesn't make you stupid. We've already established that you're gifted. I know what that's like; I was this flavour of twice-exceptional, too, and I was 28 with my ADHD was finally diagnosed. I know that doesn't help how you feel right now, but it is true.

For your school stuff, talk to your instructors about getting extensions so you can try to get caught up. Go to your school's disability services office and talk to them about what you can access in terms of accommodations. Set yourself a schedule for studying and working on assignments that you stick to no matter what.

I'm not sure why your parents are disappointed. If it's your school performance, I get it. Showing them that you're doing your best will help a lot with that. If it's the ADHD itself, that's not your fault. ADHD is hugely genetic, so it's just a thing that happens and probably you have relatives who also have ADHD, or at least people who would probably qualify for a diagnosis.

Medication can take a while to figure out, and it can be difficult to deal with waiting while you get the right medication and the right dose. At the same time, you may not notice a difference right away; so much depends on the person and the medication.

Now, you are not lazy or getting "dumber" every day. You have ADHD, which means you have executive dysfunction. That is hard because the world is not set up for people like us, so when we struggle we compare ourselves to other people and that's never a good idea.

I have a suggestion for helping you feel better about yourself, and then I have some resources for you to look at.

Start a scrapbook that's just about good things about you. Make a page for things you're interested in (or a page per interest). Do something about your favourite colour, things you have done for other people, etc. The idea is that then you can look at this book and remind yourself of the good things about who you are as a person.

As for resources, here are a couple of posts over on the main Actually ADHD site that might help with some of what you're struggling with. Most of the posts there include printables, so do have a look and see if those might help you at all.

Followers, do you have any other suggestions for this anon?

-J

[fatal-blow]

Self-Massage and Myofascial Pain: Do You Have Low Back Pain?

"Doesn't everyone?" you say. No, actually. Yeah, I find the concept baffling too. However, you too could not have back pain for the low, low price of skimming this post.

The short story of all this is that I've been learning about trigger points, myofascial pain syndrome, and the science of good posture, and I've become so absolutely furious that this stuff isn't common knowledge--

(I have encountered ONE healthcare professional who knows SOME of what I know. FUCKING ONE. And myofascial pain is something that Every Single Human Person has experienced.)

--that I'm making little self-diagnosing guides for common pain patterns based on my own experience as well as The Trigger Point Therapy Workbook, which is now my fucking bible.

Common concerns:

"I'm pretty sure it's just my fibromyalgia." Fibromyalgia and myofascial pain have tons of overlap, so I recommend looking into this regardless!

"I do have pain, but it's carpal tunnel/stomach ulcer/tendonitis/arthritis." Myofascial pain is frequently misdiagnosed, and the treatment for it is easy and unintrusive. Even if the problem isn't myofascial, practicing myofascial release can help relieve muscles associated with these conditions.

"Will I hurt myself?" Probably not*. Self-massage can cause bruising if you're a little enthusiastic, like myself, but you won't cause long term damage. Maintaining focus and avoiding pulses are your only concerns, and they are mild.

*Some health conditions can make self-massage a bit dicey. I recommend a little research beforehand if youre worried.

"What does myofascial pain feel like?" A lot of things, to put it simply. Some signs of myofascial pain that I've come across are: areas that feel like bruises with no actual bruising, skin sensitivity (if you get pain from, say, running your hand over it in the shower), an assortment of symptoms from various things that seem unrelated, pain that doesn't go away with rest, pain with no clear cause, and more.

"Do I need massage though? Shouldn't I rest?" You also should rest, yeah, but here's the thing. Myofascial pain can be Instantly Relieved with self-massage. So why wait?

Furthermore, trigger points, the cause of these pains, don't always go away with rest. They can create positive feedback loops. If untreated, more trigger points can crop up, and the pain gets worse and spreads. Targetted massage can break that loop.

"Dude, I'm concerned by how much of a conspiracy theory this sounds like." Brother me too. Miracle cures aren't a thing, but stumbling across this information sure has felt like one, given I feel better than I have in years. Just...hear me out on this one. It won't harm you to try these techniques.

"What even ARE trigger points? What's myofascial pain syndrome??"

That's a long answer that I'll need to save for another post. You don't need to know what it is or how it works, though. Just how to treat it.

For more in depth info on self-massage, check out this post.

Disclaimer: I'm not a professional at anything except for being in pain, and constantly weaseling out ways to not be in pain. All this information can, more or less, be found in The Trigger Point Therapy Workbook by Claire and Amber Davies. I'm just organizing it into a more accessible guide for myself and others.

--

I have low back pain, and my feet, knees, and hips also hurt. I might also have widespread pain in general.

This combination of symptoms is often tied to postural issues, and usually it's Morton's Foot (not to be confused with Morton's Neuroma).

One in four people have this quirk in their anatomy. The short of it is that the foot distributes your body weight across two points instead of three--which can leave you feeling off balance.

Mortons Foot can cause widespread pain. If you have other conditions such as hypermobile joints or anxiety, watch out!

Go to www.mortonsfoot.com. They'll explain it better than I can. I can also tell you they're legit; I bought insoles from them and boy do they Work.

Other symptoms: sensitive feet, frequent sprains/rolling of ankle, bad posture, unusual worn spots in footwear.

--

The pain is in a horizontal band across my back.

The nature of trigger points is that referred pain patterns can seem nonsensical. A horizontal band of pain ANYWHERE in the back, not just the low back, can be caused by the abdominal muscles.

Can be caused by slouching, improper lifting, and overworking abs with exercises like sit ups.

Associated with the pain in your back after a hard day of work. This is the source of the "back breaking" in back breaking labour.

Massage Tips:

Do this lying down. Prop your head and shoulders on a couple pillows. Make sure you're warm, cozy, and comfy.

Lower abs should be massaged with fingertips, using your other hand to support them. Use your middle three fingers and begin by searching for tender points. Focus on the central muscle. Raise your head or legs to feel them contract.

If you find a tender point (and I do mean tender. If you're not familiar with pain, you might become concerned. Don't be--your body and mind are made so that you won't hurt yourself doing this) hang out and get to know that muscle. Seek out the spot that hurts the most.

Abdominal muscles go lower than you think. Get your fingers right down in the pelvis. Root around in there like a boar roots around for truffles.

Once you've got your guy, use short strokes from one end of the point to the other. Pain is subjective, but your goal is not to be in agony. Each stroke should cause a sensation right before you would classify it as pain. If you're grimacing, or tensing your muscles, ease off.

You only need 10-12 of these strokes. Search around for other tender points, do the same until you can't find anymore.

Your pain should have eased by now. If some, but not all, has disappeared, or you didn't find any success, try the other techniques in this post.

For more in depth info on self-massage, check out this post.

Your goal: To relax and soften the muscles as much as possible. Heat and other relaxation techniques will help. One session should be enough to bring some relief, but you should repeat this until you stop finding tender spots.

After massage, stand up and gently stretch out your abdominals three times.

--

The pain is on one side, possibly both, and I sit a lot.

The section above can also help chronic sitters, but this section is the meat of the issue for us. My experience with this pain is that it's sharper and more debilitating than typical low back pain. It can make it hard to walk.

Caused by...sitting a lot. Wheelchair users take note, I wouldn't be surprised if this one could help y'all out.

This one is more likely to cause limping. Do you sit with your knees up a lot? This muscle doesn't take kindly to that. You also might have trouble getting up from low seats

Be careful with this one. If it's active, it's gonna hurt like a bitch to poke around.

Massage Tips:

Like the previous massage, lie down with your shoulders and head slightly propped up. Have an extra pillow on hand.

Pick which side you're working on. Prop your knees up, and lay your knees AWAY from your chosen side. Use the pillow to lay them on.

Use the tips of your fingers, using the opposite hand to support them, for massage. You can also put your fingers back to back (make a T) to dig deeper.

Find the hip bone. You can easily start by poking around the inside of it, top to bottom. When you find tender spots, massage with short strokes. Look for the sensation that precedes pain.

You can go deeper by pressing down into the area between the hip bone and belly button. If you feel a pulse, move closer to the hip bone. If you can't get away from the pulse, or if you've found a pulsing mass, go to the hospital. Not joking on that one.

If you're have trouble finding the muscle, bring your knee towards you. It helps if you do this with resistance against the knee. You should feel the psoas muscles flex.

For more in depth info on self-massage, check out this post.

Your goal: Relax, again try not to elicit so much pain that you're tense or grimacing. If these muscles aren't the cause of your pain, you might not even be able to feel it. Sometimes, the psoas muscles are so sensitive that you can barely touch them. Even the lightest massage can help, though, and over time you'll be able to put more pressure.

After massage, gently stretch the leg on that side behind you three times. This is best done while standing. Be careful not to strain it if you are lying down.

--

Feels like, or has been diagnosed as, sciatica.

Sounds like you've got butt problems. Yup, you've got a pain in the ass. Different from Morton's Foot because the pain comes from the hips, and rarely refers all the way down to the feet.

Appropriately, your butt might be tender. Pain tends to extend across the hips, both above and below the belt line

We qualify this as low back pain, but if you put your hand overtop of the painful area it's more like back, upper hip, though that's not always the case.

Usually only one side, but can be both.

Massage tips:

Get yourself a tennis ball. If you're short enough, a doorknob will do in a pinch. If you have access to a Theracane, that's great too.

Brace against your tool of choice using a wall. Start on the outside of your hip, beneath the hip bone. Keep your knee bent and put your weight on the opposite foot. Look for tender areas and massage them out--look for the sensation that precedes pain.

You can also sit to get at your butt muscles easier.

Work all across the outside hip and all across the butt. Hell, get other areas of the lower back while you're here too. This will kill so many birds with one tennis ball.

For more in depth info on self-massage, check out this post.

Your goals: This massage is a bit tougher to control the pressure on, but fortunately the tool you're using is broad enough that it won't elicit the intense sensations that other trigger points can. The back of your hip should feel looser and more relaxed.

After massage, guide the hip through its range of motion. Don't force movement if it feels like the joint is "catching" or if pain intensifies--at worst the area should only be a bit sore afterwards.

--

Pain is a deep ache that feels like it's in the spine itself.

This pain is actually from your spine! Well, generally. A lot of muscle pain gets referred away from the problem point, but these guys are right where you expect them.

Admittedly I have less experience with this back pain, but typically pain is also accompanied by your back feeling stiff as a board. It's the pain typically associated with throwing out your back.

This pain often gets blamed on osteoarthritis, but even if you have signs of damage on xrays, sometimes it's muscular.

Fun fact: these muscles, which run along the spine and interconnect the vertebrae, are only relaxed in two positions: lying on your back, and standing up straight. So if they're tensed up when doing either, something is going on.

Massage Tips

Tennis balls and objects of similar size can help, but sometimes don't penetrate through the muscles well enough. For an extra boost of gravity, you can also lie on a bed, with your tool of choice on top of a paperback book.

Follow the pain, massage it until it feels better. Don't be afraid to dig in if you aren't getting results. The muscle here is thick.

Best practice is getting the tennis ball into the groove of your spine and just going to fucking town.

Theracane can also be used.

For more in depth info on self-massage, check out this post.

Your goal: Your hope is to see a release of tension in the back. Before and after massage, lie down with a heat pack and relax to help soften the muscles.

Don't worry too much about stretching out these muscles until you have more confidence in your body again. It's easy to overstretch and undo all the progress you've made.

--

And that's about it for lower back. I'm happy to add any clarification on these points if necessary, but please don't come into my inbox expecting me to diagnose you.

If you're a friend/mutual, though, feel free to hmu for more specific advice.

Final note: expect to need to work on these more than once, and don't be surprised if you only get relief once you've tried some or all of these. Experimentation is your best friend with myofascial pain, and even if it's not the source of your problems, it's good to gain familiarity with your body and the pain you experience.

[monstersinthecosmos]

can i vent about the healthcare system lol

This year I have health insurance for the first time since I was a child and when I tell you it sucks, I hate this, I hate participating in this system, I miss when I was just in pain all the time and didn't even bother going to the doctor bc I didn't have insurance anyway, I don't love this system where I read my insurance policy and think something is covered and then it isn't except maybe it is and maybe it got processed by a bot and I have to call the insurance to dispute but then I have to call my doctor to dispute and then I have to call the insurance back to dispute like, guys I have phone anxiety I'm gonna just pay you all this money instead of making phone calls I guess.

i have nerve damage and my treatment options so far are a $1,300 shot that might not actually help and I'll have to get another one in a few months anyway or I can go to physical therapy where they want to see me 2x a week for $250 per session. My insurance only covers a certain number of sessions and even if I did go to all of them, I still wouldn't hit my deductible. The PT place has a financial assistance program but it's only for people who have hit their deductible. (What's the point lol).

I'm also at a dead end trying to get diagnosed & treated for hypothyroidism because "weight gain" is listed as a symptom and BCBS says they don't cover "weight loss" treatment even though that wasn't what the fuck I asked and I was more concerned that my hair is falling out and I'm freezing all the time. Like where does it end, every time a symptom of something includes weight gain. What if a skinny person has it. Is this discriminatory? Is it a coding error? Will I pay the $215 I got charged for having my thyroid tested and simply not continue treating it now, because I don't have the constitution to make 100 phone calls and argue with people? lol.

the spine specialist orders an MRI and says I'm too young to have surgery so I should just do pain management. the pain management doctor tells me to lose weight. (it's hard, because, I think my thyroid doesn't work.) he says lyrica might help with my nerve pain but it causes weight gain so he advises against it. i wonder at what point does BCBS decide that spine & nerve pain is because I'm fat and won't help me anymore because it's weight loss related.

And let's not talk about how I was like, you know what, I would rather just build up some medical debt and pay it off slowly because I'm terrified that I'm going to have permanent nerve damage, and I applied for financial assistance with the hospital, and they approved me, but they don't help for any bills which are under $2000. So my $900 MRI or my $400 nerve test or my $1300 shot are not eligible for financial assistance, even though my hospital balance would be over $2000. I go to set up a payment plan and it won't let me set the number I can afford. I manually enter a bit at a time and they won't stop emailing me that I owe them money because I didn't use the official interface for a payment plan. I call their financial assistance to ask why they didn't adjust my MRI bill, they tell me because it's under $2000, I get so overwhelmed and start crying on the phone like an asshole so I hang up before I remember to ask about adjusting the payment plan.

like is better that I'm now $1300 in the hole for tests that told me I have nerve damage and arthritis and disc degeneration when I can't afford any of the treatments? Is it better to at least know? But what's the point if I can't do anything about it anyway except YouTube yoga and Aleve for breakfast, which I was doing anyway when I was uninsured. Thanks, now I know! I cannot feel my leg! Pray for me that I don't wind up paralyzed from ignoring it!

(I think part of me committed to these tests because I was like, well, if there's NO damage I will know and I can stop worrying, but there is damage, so now idk how to feel.)

anyway it's just. I've always known this system was garbage from the outside when like, I've spent years having to treat things by myself at home, I've had so many times where I didn't go to the ER when I probably should've, I've passed on really fun outings with my friends like snowboarding or roller derby because I'm too scared I'll get injured, my mental health is at all times hanging on by a thread because I can't get medicated (put a pin in this one bc I finally got an appointment for an evaluation but my insurance doesn't cover most of the meds LOL). It already sucked on the outside and was already a huge embarrassment to me as an American but like. I finally have insurance and it wasn't' even worth it.

and like. there's stuff I can afford. I'm making better money than I did in my 20s. Like, okay, it sucks but I can pay $215 for my thyroid test at the end of the day. But I don't want to. It sucks and it's not fair. I shouldn't have to. And like it's $215 now and then how much later. It's not sustainable at all. And if there's a way for them to cover it and not discriminate against me for being fat, it's behind so many barriers of me trying not to cry my eyes out on the phone and tbh I don't see it happening LOL.

but elon is on track to become the first trillionaire and our taxes are bombing children in tents, cool cool cool

I just don't understand who the fuck this is even for. WHO is out there with $2,000 to drop every month on physical therapy. Who is this for!!! WHO IS IT FOR!!!!

[stackslip]

Thank you so much for your BPD post. I've had people judge me irl for going from openly identifying as bisexual specifically to IDing as Lesbian (with a secret Bi- for Cool People)/Queer/It's Complicated. And while some of that is genuine shift in my identity, a lot is about seeking medical diagnosis rn and being scared of a BPD diagnosis and I can't explain that to people BC I'm worried they'll take that as manipulative, too. Seeing people talk about how it's genuinely dangerous and how bisexuality is such a factor in the diagnosis is really fucking validating.

i rarely see people talking about the biphobic aspect to how bpd gets diagnosed—one of the main diagnosis criteria is about "disordered/unhealthy sexual behaviors", which immediately pathologises bisexuality and any kind of non-normative sexual behaviour from non-monogamy to having kinks to just enjoying having sex with strangers (and again if you're bi this is included in the non-normative, disordered behaviour). i remember reading how bi/pan women tend to have higher bpd diagnosis rates than heterosexual women and even lesbians bc of the whole "oh you're bi you cant choose a side so i diagnose you with manipulative slut disorder" and i mean i experienced it myself, with a doctor trying to diagnose me despite not even fitting *any other criteria at the time* except that my anger at the abuse i saw in psych ward counted as a "manipulative ourburst" i guess and me being perceived as a bi woman sealed the deal lol. so i feel you entirely, as an nb dyke myself

as a whole id argue that bpd and most psychiatric diagnosises are only as useful as far as they provide you with a community who might share similar issues and in rare cases, being able to support each other. certainly i know friends who are antipsych but id with bpd in terms of being able to better understand specific symptoms of trauma and find tactics to handle said symptoms better, as well as support others with similar delibitating symptoms. but this is what a shared community does that can be good—the truth is, bod and most personality disorder diagnosis are not just fundamentally flawed but used to deny any kind of care or help to already traumatized and depressed people. ive heard cases of "misdiagnosis" of bpd, but id argue any official psychiatric diagnosis is a danger bc it puts a target on you and marks you indefinitely. you could fit the bpd criteria to a T and I'd still argue that a diagnosis is a danger and can actively impede your access to care, and be used as ammo against you by doctors, healthcare providers, family and even random acquaintances because frankly, no matter how nice an individual doctor is, most doctors treat a personality disorder diagnosis as a way to say "this person's shitty and hard to deal with and should be kept away from healthy society" and it's also how it's used by 90% of people (whether in healthcare or otherwise) who love to have a way to distance themselves from Irrevocably Broken People and put any instance of abuse or poor behaviour on them. there's a much wider argument to be had about the harm of psychiatry as a whole, but i have this particular issue at heart. i know so many traumatized and abused people whove been retraumatized and frankly destroyed by being marked with this kind of diagnosis, whose abuse has been justified by their peers bc they have the Broken Slut Disorder or the Has No Feelings Disorder or the Selfish Cunt Disorder. which are all apparently Real and Important medical tool that serve an important function and should never be criticized lol

[blubushie]

I love looking up a disorder and it’s like “symptoms: you’re fucking evil. if you’re a bad, awful person who kicks puppies for fun, you can be diagnosed with this disorder. people with this disorder are terrible people and everyone hates them.” Thanks MayoClinic, i was just trying to figure out if the lack of innate moral compass I find myself with might be a symptom of what’s up with my brain rather than just me being a bad person. Nice to know that even if it is a symptom, it means I’m just biologically wired to be a bad person. (this is all sarcasm)

This is basically how all the cluster Bs are treated unfortunately. And even ASPD gets a bad rep on Tumblr. Tumblr loves its narcissists and is all for removing stigma around them but sociopaths are just left in the dust. We're not bad people either. We didn't choose our disorder either.

It's all "be gay do crimes" until you're gay and do crimes cuz you're a sociopath who has the Does Crimes trait.

Also people trying to tell people not to use the word sociopath? I don't mean not using it for random people I mean "people with ASPD shouldn't call themselves sociopaths cuz it's a stigmatised word". Fuck those people. I'm gonna call myself whatever I like and "as a sociopath" rolls off the tongue and is a lot more fun to say than "as a person with ASPD". Worry about your own language instead of policing mine, I'm gonna call myself whatever I like and maybe by using the actual term for my disorders I'll remove some of the stigma surrounding it when people interact with me and find out I'm a good person despite my supposed "bad people disorder". Maybe then they stop painting us with a wide brush of "all sociopaths are evil".

You're right anon and you should say it.

[sophieinwonderland]

Do We Really Have To Do This Again?

Okay, guess we have to. 😔

And no. Someone else might block these. Personally, I prefer to respond with debunking posts that are sent to the anti-endo tags, because if anti-endos are going to purposefully invade our tags to attack endogenic systems, anti-endos are sure going to see the responses.

Now, to your concerns...

Most of this seems to be a vent about a bad therapist not taking obvious signs of DID seriously. And then trying to ascribe blame to the endogenic community for this somehow.

And this is... really weird. @the-chaos-crew doesn't seem to actually know what they're complaining about.

The vast majority of endogenic systems aren't "trying to be debilitated." Most don't claim to have any sort of dissociative disorder nor are they seeking treatment for it.

Frankly, it seems like you're confusing "endogenic systems" with "imitated DID." The latter being a largely fictitious or over-exaggerated group of alleged DID fakers. I've debunked this concept in the past:

If you notice, the people these papers use as an example often say they were traumatized, and talk about that trauma. Especially in the group they decide is just BPD.

And if you pay attention to a lot of the TikTok DID systems people love to fakeclaim, these too generally mention childhood trauma. Most are actually anti-endos, funny enough.

Endogenic systems are a group that's usually non-disordered and by definition, not traumagenic.

So-called imitated-DID cases, where much of the fakeclaiming originates, generally ARE traumagenic by their own reports, and obviously disordered.

These are two largely different demographics.

That's not to say you should get mad at the so-called Imitated DID systems either. The very concept of Imitated DID was mostly driven by ableism, politics at the time, and trying to protect therapists from malpractice lawsuits.

There's No Indication DID is Less Likely To Be Diagnosed Today

In the 90s, DID was renamed, a ton of psychiatrists decided it must be a fad, "Imitated DID" theory caught on to explain away false positives. Fewer people were diagnosed for a while.

To my knowledge, there's been no evidence DID has been diagnosed less since the term endogenic was coined in the late 2010s, or that endogenic systems have any impact that would prevent people from being diagnosed.

Sometimes a bad therapist is just a bad therapist.

Well if your therapist who tells you not worry about your memory gaps and blackouts says something, it MUST be true! /s

Meanwhile, here is what the creators of the Theory of Structural Dissociation have said:

And here is what the ICD-11, the diagnostic manual compiled by the World Health Organization, says about being able to have multiple distinct personality states without a dissociative disorder.

Again... maybe you just have a bad therapist.

But you already knew that, didn't you?

Just Going Total r/fakedisordercringe

TLDR; "I know some people with these disorders, therefore I know how EVERYONE with these disorders behaves."

Putting aside the fakeclaiming of systems in the rest of the post, this is also a terrible way to treat mental illnesses. People with mental disorders are not a monolith. While there may be some who mis-self-diagnose, simply knowing someone with a mental illness doesn't give you magic insight into everyone with that illness.

What's more, not everyone will expose their debilitating symptoms for you to know they're really disordered. Some people have learned to adapt or to hide. And especially if you're on the internet, you may only be interested in sharing the positive experiences.

You don't know how someone struggles offline or in their personal lives, so stop pretending you do.

Seeking Therapy For Non-Disorders

Do you understand how that would be counterproductive to the whole premise of this post?

You're supposedly upset about endogenic system stealing resources from systems. How would non-disordered systems seeking therapy for being systems do anything but exacerbate the problem you think exists?

Here's the thing... normally, I wouldn't care if you want to vent. Even if that vent is contradictory and nonsensical as this was. Clearly, you're in a lot of pain right now.

But you made a conscious choice to go into endo safe tags to intentionally hurt other people. And that's not acceptable.

So I'm going to ask the anti-endo community to explain to @the-chaos-crew why we don't crosstag. That way, I don't have to keep coming into their spaces every single time anti-endos break containment and come into ours to spread hate against us.

Stay out of our tags, and I'll stay out of yours.

[narcissist-culture-is]

is this the inbox?sorry if its not, im not good at tumblr :( anyways this isnt really a culture thing, i just figured people with npd will see this and i need Help.

i (18) have bpd & ive been diagnosed since i was 16 (i know they dont usually diagnose teenagers but uhh special case or whatever) & im pretty okay with that, i guess ive come to terms with it.

i have this ex boyfriend who was really really shitty and he has npd. (i feel like i should say: i dont believe in narc abuse or anything, this ex just happens to be a shitty guy and have npd) after we broke up i was really scared of people with npd because i associate npd with my shitty ex. ive worked on it in therapy because i know thats Wrong of me, but at the end of the day its just a trauma thing.

anyways, recently ive been noticing stuff in myself that im like. i dont know if i was always like that or if its just something thats developed as i got older? but i see a lot of npd symptoms in myself and its scaring me because i dont want to end up like my ex. i know that just because someone had npd doesnt mean theyre gonna abuse people, it just scares me because i dont wanna have things in common with him.

i dont even know if i *actually* have npd, i just show a lot of symptoms. and i know like 40% of people with bpd also have npd which is scaring me so much because i dont wanna end up like him. am i insane for feeling like this or is this a thing other cluster b's have experienced augh

No worries, u did send this to the inbox :)

First off, I'm so sorry about ur ex. No one should have to deal with a shitty partner, period. I hope u continue to heal from that and u find a partner who treats u right.

Second, I don't think it's insane to think like that. It's great that ur working through those feelings and trying to fight the stigma against NPD. Trauma just does weird shit to ur brain unfortunately. It makes us associate all sorts of things with our trauma/abuse/etc etc and it can be super hard to unlearn that, but the fact that ur trying shows that u care.

I'm going thru something similar (just switch the bpd and npd) & I can relate to the "feeling like u might end up like that person" so much. Idk if I really have advice on how to not feel like that, but I can at least say that ur feelings are normal and valid.

Ik we're just strangers but u seem like a nice person to me. And I think that wanting to not be like ur ex is a good sign that u won't end up like him. I'm not the best at comforting people but I hope that any of this helps u feel at ease. Plz don't hesitate to reach out if u need someone to talk to ♥️

- Hana 👻

[eliteayurveda]

Coping Strategies for Depression and HS

People who have persistent skin disorders such as hidradenitis suppurativa (HS) are more likely to develop depression.

Apathy, sad mood, hopelessness, impatience, and lack of desire are common symptoms of depression in patients with HS.

Coping with depression and HS is a continual journey, but there are measures you can do and people you may call out to for assistance.

Life with hidradenitis suppurativa, often known as acne inversa, is fraught with difficulties. Many persons with HS endure the psychological impacts of having a chronic skin condition that causes misery in their lives, in addition to painful physical symptoms. In fact, those with chronic illnesses are more likely to develop depression.

Depression in HS Patients

“Studies reveal that depression is really common in both pediatric and adult patient populations who have HS because of the effect it has on your mental health well-being,” he said. “In one study, more than 38% of participants with HS had depression, compared to only 2.4 percent of healthy non-HS control groups.” The pain, inflammation, and emotional stress associated with HS appear to play a significant influence in the occurrence of depression in this population, as well as many other chronic and long-term diseases.”

An analysis of ten studies discovered that depression and anxiety are widespread in patients with HS and advocated for greater research to assist identify and treat mental health issues. In another study, researchers in Denmark looked at over 7,000 persons who had been diagnosed with HS. Participants with the skin disease had higher rates of depression and suicide than those who did not.

Note: If you or someone you know needs help, you can contact the National Suicide Prevention Lifeline at 9152987821

Depression Symptoms in People With HS

Several signs may indicate that you are depressed as a result of your HS condition. These are the following list of possible indicators:

Apathy

Depressed state

Embarrassment

The fear of social stigma

Hopelessness

Irritability

Inadequate motivation

Concerns about sexual activity

According to the American Academy of Dermatology Association, feeling unhappy, hopeless, or apathetic for at least two weeks may suggest depression.

“People with HS often feel the need to self-isolate, they have mood disorders and low self-esteem, which correlate with depression, as well as physical limitations in day-to-day activities due to the very painful open sores and lesions on the skin that we know are part of having this condition.” When you have these feelings and symptoms, it is usually a sign that you should get help.”

How Depression Affects Life Quality

Because of feelings of self-consciousness, a negative body image, and low self-esteem, HS can be emotionally draining, especially if you experience chronic pain and flare-ups. It is also difficult to navigate social situations. According to a survey the physical and mental impacts of HS can have a substantial impact on quality of life.

Researchers from the University of Copenhagen interviewed 12 people and held focus groups to learn more about how HS affects quality of life. They discovered that living with HS had a substantial psychological and social impact on over 60% of the participants. Participants discussed emotional issues, self-worth, social stigma, intimacy, general dissatisfaction, and the desire for a community where they can securely communicate their concerns with individuals who understand what it’s like to live with HS. Some also cited difficulties taking time off from work and being worried of losing their employment as a result of having to obtain sick leave on multiple occasions.

“I was doing so well with so many things to help my body and mental health,” one of our patient said. Then I started thinking about all HS has and will continue to take from me. For a few weeks, I lost track of what I was eating, my stress level, and my mental health. So, I’m not going to let my HS continue to take stuff away from me. So I’m back to find my way.”

Obtaining Depression Treatment

If you are experiencing symptoms of depression, it is critical that you speak with someone who can assist you. While your primary care physician and dermatologist can assist in the treatment of physical symptoms of HS, you may also benefit from visiting with a counselor, psychologist, or other mental health specialist. Furthermore, support groups and networks can provide a secure and friendly environment in which you can openly share your experience.

“I’ve had this for 35 years,” one of our patients tells us. To varied degrees, we all experience physical and mental suffering. We understand how it feels to wonder, ‘Why me?’ I’m sure many of us have experienced losing friends and social contacts as a result of HS. You are NOT alone, and it is safe to express yourself here. Nobody will judge you for feeling down. “

In some cases, medicine might help alleviate depression. “This is a genuine question for your doctor.” “If you want to treat your depression with medication, talk to your doctor to see if it’s a viable option,” Yu added. “There are other ways to treat and cope with depression, including therapy, social support groups, exercise, meditation, and other homeopathic routes.”

Depression Coping Strategies

Finding techniques to cope with depression while living with HS is one of the most effective ways to enhance your quality of life. In addition to getting professional assistance as necessary, you could try daily rituals such as:

Contacting a loved one

Exercising

Going for a walk in the fresh air

Meditating

Speaking with family or a support group

Keeping a journal

“Whatever activities you choose, make the commitment and consistency to check in with your own mental health.” But, most importantly, schedule particular times during your workday, school day, and at home when you can prioritize yourself and give yourself the grace and kindness to exist with HS — and everything else going on in your daily life,” 

“For the longest time, I felt alone and still do,” our patient says. I hide my low self-esteem and despair from my family. Now that I’m in my 30s, I’m not going to let high school define me. Don’t give up hope. Get out of the house and do something entertaining if you start experiencing bad thoughts.”

We also recommend practicing mindfulness and repeating self-affirmations throughout the day: “You could say something positive to yourself, like ‘I am beautiful,’ ‘I am strong,’ or even ‘I have HS and I am fill-in-the-blank.'” To acknowledge your condition and the fact that you’re owning it, repeat the affirmation to yourself throughout the day and to your friends and family. You’re taking back control. You’re expressing your emotions. You recognize the societal stigma and challenge your negative ideas. ‘Yes, this is difficult,’ remind yourself. Yes, it might be painful at times, but you have control. You’re working your way through it day by day.”

Managing depression and HS is a never-ending process. The good news is that there are steps you can take and individuals you may contact for assistance. “If you have HS and depression, don’t be afraid to seek help. It does not imply that you are inferior or weak. You are not restricted to experiencing life in this manner. There are support groups available. There are family and friends to talk to, as well as customs to experience and try. “There is light at the end of the tunnel,” Yu explained.

Talk to People Who Understand

We also have a strong community of thousands of our ongoing and previous HS patients who ask questions, give advice, and share their stories with others who understand life with HS.

Do you suffer from depression as a result of your HS? Share your thoughts in the comments section below, or start a discussion on our community space.

While HS is still not fully understood, experts believe that emerging research will provide alleviation to those with HS in the future. “While there is still a lot we do not know about HS, there has been a lot of research in the last several years, fortunately, we have made several breakthroughs that have resulted in a wide range of treatment options for this condition.” We hope that more people become aware of this issue so that they can seek treatment sooner and lessen its impact on their quality of life.”

[crippled-punk-guy]

Just a quick warning that this gets pretty heavy. I usually don’t feel the need to add warnings but if discussions of medical neglect bother you please don’t read this for your own sake.

Getting run around in circles by doctors again. One doctor says I need genetic testing to confirm. The genetics office says it’s not necessary because having a diagnosis won’t stop the symptoms(?). And my pcp’s receptionist basically said it’s out of their hands and there’s nothing more they can do. Which I understand they’re just general practice I’m not blaming them, but what is the actual point of having an EDS specialist if all they do is tell you “oh yeah you definitely have it. But knowing for sure won’t change anything. So instead of getting the diagnosis that would help you get access to other tests you need and equipment you shouldn’t have to pay for yourself we’re going to dismiss you and subtly imply you should shut the fuck up”. So what do I do now. I was told to call the genetics office that I’ve already been to before and tell them everything I have before knowing they’ll say the same damn thing again and again until I finally give up.

So essentially, I more likely than not have either Classical like or Hypermobile type but they won’t test to confirm because “it won’t change anything”. Except it will. It would make doctors stop thinking I’m crazy. It would make my insurance company have more reason to listen. It would make it easier to at least know what complications I’m at risk for. But none of that matters. Because there’s no cure. Even though two physical therapists that specialize in this agree that I have it and two primary doctors have aswell, all of whom say I need genetic testing because they’re genuinely worried about me and have said before they can’t believe that I’ve been denied testing.

So what do I do now. I’ve done what I’m supposed to. For six fucking years I’ve seen doctor after doctor trying to figure out what’s going on in the first place. And when one of them has an answer that makes sense and my other doctors agree with they say it’s not important enough. Well it’s important to me. And every other patient dealing with the same shit. It’s important to me because my joints are getting worse. It’s important because I’m having heart and blood pressure problems. It’s important because I’m having other issues I won’t share here.

So when does it become important enough? When my neck finally becomes so unstable it causes a chain reaction of other problems? When I can barely walk because of pain and dislocations and falling? When it’s impacting my eating and sleeping and every moment of my life?

Is that important enough yet.

Or are you going to just wait for me to die so you can avoid diagnosing someone else with this disorder and keep saying it’s so rare you don’t need to bother with it.

Why is this condition treated like this. Why is it “not important enough to test for” when it has life limiting and life threatening complications.

This is why patients turn to the internet. This is why patients lose faith in medicine. And I’ll let you in on a secret, I have great insurance. I am incredibly privileged to still be on my parent’s insurance, imagine how much harder it would be for someone who isn’t.

In conclusion, I’m just going to start telling my doctors I essentially have hEDS. Many doctors have agreed, I have a diagnosis of hypermobility, they just refuse to make the wording more clear or do testing to rule out other possibilities. I have all the symptoms. I have for years since my literal childhood. And they’ve gotten worse. Slowly at first and now very concerningly quickly.

But it’s “just being flexible” right? It’s not like it’s completely disabled me or anything. No biggie. /s

[certifiedceliac]

“Developing a food allergy/intolerance/restriction as an adult is very hard and everyone's process in adjusting is different. Even if you feel like things won't get better, it will become more normal, and you will be ok. I promise I promise I promise.”

I have a question. How long should it take for things to feel more normal? Maybe I have a few things conspiring against me, but I just can’t feel normal. I was diagnosed with celiac without ever having symptoms (or at least without having symptoms I ever tied to consuming gluten). I was so skeptical when I got the call from the doctor that I laughed. The reason I was tested was as part of diagnostic work up for type 1 diabetes diagnosis that landed me in the ICU at age 35. My DGA and TTG were through the roof but I was very skeptical. I’d been eating bread every single day! The endoscopy came back as Marsh 3C so I started coming to terms with the fact that I was, indeed, in danger.

That traumatic series of diagnoses was all in summer of 2020. I’ve had to use insulin, started eating low carb, and have been avoiding gluten. The first two I got used to. The gluten avoidance through is honestly the one bothering me more. The fact that I can’t really eat out anymore, not without worrying a lot, because even if the place has a gluten free menu or markings, restaurants have been in a pinch since Covid and have taken a lot of shortcuts. I don’t really eat at friend’s houses. I don’t want to go traveling to places where I can’t know for sure that I’ll be able to find gluten free food. It’s just been miserable, I’ve been waiting for it to get more normal, but isn’t 3 years a long time?

I’m paranoid because I don’t have symptoms (I don’t know what it feels like to get glutened) but my antibodies have plateaued above the normal range and I can’t seem to get them to go lower. I’m sick and tired of having my world feel so small because I can’t eat most food. It doesn’t feel like it’s getting more normal, it feels worse and worse as the world slowly goes back to pre-lockdown socially while it feels like I’m the only left in food lockdown.

Thanks for any advice :(

Gosh that sounds like a ride and a half. I'm so sorry that your journey so far has had so many challenges. My answer is a little lengthy, so I'm putting it under a break.

To answer your question anon, it's really something that just depends. In my case, I was initially diagnosed with celiac in 2014. At the time I was also dealing with diagnosis and removal of a pituitary tumor, so because of that I kind of treated celiac as an afterthought--I already felt terrible in a million other ways, so I was pretty lax the change. I wasn't really given any education on how to adjust my diet or eating habits, or the risks associated with continuing to eat gluten. I sought a second opinion from a doctor that ended up knowing jack about celiac disease, and was given an IBS diagnosis instead (because I'd been eating GF for a year, they found no damage to my intestines, and I wasn't eating gluten at the time). From 2015 to 2020 I was back on eating gluten, but after I started having severe symptoms (again) I was rediagnosed by another (much better) GI team.

I have a few additional problems now because of the untreated celiac that I probably wouldn't have had I been better educated the first time around, and I'm pretty bitter about that sometimes. But I've also been very lucky to have such a good support network of people that understand and care about me, and that makes a lot of difference.

What I'm trying to say is that, while it will get better, it doesn't always feel like it. There are days that I really struggle with anxiety around eating in front of others, frustration over the lack of convienence, and the feeling of exclusion (or at least seperation) from meals with family, friends, and coworkers. I relate to you with the lack of symptoms--I've only been truly glutened once to my knowledge, but additional GI issues I have always have me on high alert. I'm also currently dealing with unexplained elevated TTG/IGA levels, despite being extremely strict nowadays.

Doing my own research and starting this blog really helped me to focus on the things I can do rather than the things I can't. I also just kind of brute force my way through things that gave me anxiety before, like taking my food with me to friends' houses or restaurants. I've been through so much, I no longer care what people think lmao

Basically your mileage is going to vary. I wouldn't say that these things have a set timeline, and I personally think the mental part of dealing with a diagnosis like celiac takes twice as long to heal from compared to the physical part. It sounds like you're struggling especially hard with feelings of loss and detachment. That's not uncommon, but you may benefit from talking about all of this with a therapist, or just reaching out to a friend to say you're struggling.

Give yourself credit--you've gotten so far from where you were. And remember, even if you feel isolated, you're not dealing with this alone.

[ed-recovery-affirmations]

I want to make my relationship w food better but it’s hard bc of my parents are so ingrained in diet culture. Like for example I try to explain to them that carbs are not bad for u but then they say they’re on the border of diabetes and my dads doctor told him to limit the carbs and that I should be careful too like I don’t even know what to do

Hi anon! That does sound tough. So this is complicated by their health issues. I always say "food has no morality" because a lot of people do assign blanket "guilt" or "badness" to certain foods. And while carbs, for example, are not inherently bad for everyone, some people do have medical issues that cause them to change their diets to meet their medical needs. That doesn't make the foods they eschew "bad." It just means that everyone has different needs!

For example, gluten! Gluten became a big buzzword in the past ten years or so, and a lot of people inherently assume that it is poison and that life is healthier without it. That leads to a lot of guilt around eating what has been a staple crop in many cultures' diets for thousands and thousands of years!

Unless, of course, you have celiac disease. If you have celiac disease, gluten WILL poison your body, and you WILL be much healthier if you never eat it again. But for everyone else, treating gluten that way can cause a great deal of harm and stress.

So it is true that for certain types of diabetes, a high-carb diet will worsen symptoms, and carefully measuring carbs will help to keep symptoms in check. (That is why it's so hard to keep a healthy relationship with food when you have a pre-existing health condition, unfortunately. It's very hard, emotionally and socially, when your body inherently treats delicious cultural staples as the enemy.)

However, this is only true of your parents and their pre-diabetic symptoms, and only if they've been working with a doctor! Carbs are not inherently bad for anyone else, and if you're not diabetic or in the pre-diabetic stages, then carbs are not at all bad for you! You can only get diagnosed by a doctor, so you don't necessarily have to take your parents' advice unless a doctor concludes through testing that you are also at risk for developing diabetes. It's understandable that they are very worried about their health if they're at risk for diabetes, and worried for yours too. And they're working based on the instinct that what's good for them must be good for you. But I imagine it's triggering hearing them talk about it so much, especially when they try to push it onto you.

I'm sorry to hear that this has been such an issue in your home. Do you think that your parents would be open to hearing about how much it stresses you to hear them talk about carbs because you struggle with your relationship with food? Do you think you'd be able to work with them on boundaries regarding recommending you diets? If not, your best bet may be to take space when triggered, to breathe, and remind yourself that all bodies have different needs and that carbs are not inherently "evil" and are, in fact, a necessary nutrient. It's just that different bodies need different amounts of them depending on various factors. Try repeating things of this nature that calm you, and remind yourself that if you're not noticing any health symptoms that you would need to take up with a doctor, then it's absolutely not necessary to restrict anything you've been eating.