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Let’s talk about what your friend (it’s me, I’m the friend!) with an autoimmune disease wants you to know…

Autoimmune diseases cannot be cured with any one diet or methodology. If it could, all of us with incurable chronic illnesses would jump on board. The wellness industry is largely unregulated, often lacks evidence-based principles, and preys on the idea that certain disabilities and illnesses can be avoided. “Gut health” as an umbrella term that cannot be adequately applied to autoimmune diseases like Crohn’s and Colitis. Please do not send articles like that to me or folks with IBD. Even when it is well-meaning, it is exhausting to experience because it lacks basic understanding of the issues that are at the center of autoimmune diseases at large, which are characterized by their lifelong nature and a lack of cure. Even if you have a friend with a form of IBD that has seen vast improvements with, say, a raw vegan diet (or whatever their diet may be) and you want to share that triumph, I urge you to resist. What works for one person with an autoimmune disease will not necessarily (and often not) work for another person with the same disease. Autoimmune diseases can be “under control” at times, but they cannot be cured or officially in remission. Your friend with a specific diet might find that it stops working at any given time due to a flare-up, and folks who take certain medications can become immune to their benefits suddenly. I have been on intravenous immunosuppressant drugs for over 15 years. I was on one for 5 years that vastly improved my quality of life and then one day stopped working entirely due to a build up of antibodies. It took many years to get my Crohn’s under control again with a different drug, and any day could be the day that the one I’m on stops working too.

I don’t mean this to be negative, but only encourage you to seek empathy for chronic illness patients rather than thinking you’re helping by sending an article based on the newest wellness industry buzzwords. I know that at your core you want to be helpful to your friend or family member that suffers daily, but the most helpful thing you can do is listen to their experience. And when you listen to their experience, please understand that it is only their experience and cannot be applied to others that share the same illness.

We all want to live in a world of quick cures and absolutes. We all want to believe that we won’t one day become sick and disabled. But it is deeply harmful to perpetuate this type of idea, especially for those of us already living with invisible and incurable health problems. Conflating the idea of health (often read as: clean eating and/or lower weight) with better morality is rooted in ableism and anti-fatness, and anti-fatness is heavily rooted in anti-Blackness. Before I get carried away, these things are heavily nuanced conversations. We can unpack these things all day long, and there are many ways to seek out education that provide a deeper dive into those subjects. The point of this is, I can’t be the one to speak for everyone’s experience because those experiences are not mine. You’ll never catch me giving unsolicited heath advice of any kind or pushing the idea of cures / improvements. I won’t even want to share advice about what works for me specifically because there’s no way to know if it could be replicated in another body. All your friend with an autoimmune disease wants you to understand is this. And I’m also pretty sure anyone who has ever been given unsolicited medical advice for ANY reason begs you to do the same.

#CrohnsDisease #UlcerativeColitis #IBD #AutoimmuneDisease #chronicallyill #ChronicIllness #biologic #Infusion

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I Just Want My People To Understand What My Everydays Are Like…

I’m not new here, but this is my first time expressing myself. I was first Dx w/ Fibromyalgia in 2013, I didn’t let it define me! I was hit hard in 2018 with #Gastroparesis . A few months later, Hypermobile Ehlers Danlos Syndrome (although I knew I had #hypermobileehlers-DanlosSyndrome(hEDS), I just didn’t know it was a disease… I was a gymnast childhood - early HS). Then came one diagnosis after another. Whammo!!! #POTS , #MCAS , Small Fiber Neuropathy, etc,. So from 2018-Present. I have 15 confirmed diagnosed chronic diseases. I have not driven in a little over 2 yrs b/c of POTS & fainting, & it really sucks!!
All of my local friends have gone. My college roommates (7) & I have a daily group chat going. Nobody (1 roommate does) ever checks in with me to see how I am. Everyday I’m completely #Fatigued . I have #ChronicPain everywhere!!! I’m #nauseous . I have #chronicdiarrhea & #chronicconstipation . I have #ChronicMigraines It hurts to walk. The rapid electric zaps from the #SFN is excruciatingly painful. My #RheumatoidArthritis & my #Osteoarthritis & now #Facetarthritis in my cervical spine has become so debilitating.

I don’t want to be a downer, but I would friends/family just to text & say "Hi, I was just thinking about you, I hope today is better than yesterday… remember I always love you!" This way they don’t have to ask how I am doing, thereby don’t get an answer full of negativity, but at least I know that I’m still in their thoughts!

I’m angry. I’m depressed. I’m sad. I’m lonely. I’m #housebound . I’m bored.

Being #chronicallyill totally sucks! Yeah, I’m having another #pityparty

32 reactions 13 comments

I just want a diagnosis

About almost every week I have an episode or complete paralysis. I go to a high school and I see the nurse all the time.

Today I had an episode so bad that the nurse had to come in class and pull me out. Luckily my boyfriend was there and my dad came. Now I have to go back to the doctor.

I’m just scared. I want this to be over with. I don’t want people to see me like this. It’s just hard. My friends my family the nurses my teachers and of course my boyfriend worry about me.

I’m just going to have my fingers crossed that this appointment gets somewhere. 🤞🏽

💕🥄✨ #Undiagnosed #mentally tired #Spoonie #chronicallyill

6 reactions 5 comments

My undiagnosed illness symptoms

Here are my symptoms at the moment:

Weight gain

- Previously I was always on the thin end of the spectrum now on the overweight boundary

- Have been passively been trying to loose weight for 18 months (usually I barely have to try to loose weight)

- Average exercise 30-60mins/ day

- I look pregnant

- None of my clothes fit anymore

Brain fog

-Can’t concentrate

- Poor memory

- Feels sludgy, no smooth thoughts

- Almost constant headache

Frequent illness/ infections

- Getting ill once a month with a cold/ flu something like that

- Have developed nasal polyps as a result

- Recovery slow avg 2-3 weeks which means I’m ill 50-70% of the time

Absolutely exhausted

- Could sleep for England Sometimes struggle to get to sleep

- Can easily sleep well over 12hrs but up to 24hrs at a time

- Difficult to get up in the morning, everything heavy

Loss of libido

- 3-4x per week down to 1x per month

Nipple discharge

- Started in January 2022

- Can be clear, milky or clear with yellow in it

- Often spontaneous after a shower

Numbness and tingling in hands and fingers

- Palm of right hand feels like ice is being rammed into it. Almost feels like the nerve is exposed and cold but it doesnt hurt and there’s not anything I can find that helps

- Left hand pinky and ring finger often go numb

- Often comes in waves where it will be almost constant for a few days or weeks then subsides for a bit

Temperature sensitivities

- Often too hot or too cold and struggle to get to the right temperature without swinging too far the other way

Loose, clicking joints

- My ankles are always giving way and often hurt for days after a particularly bad roll

- Many joints click when I move and I sound like a 1 man band, in particular my knees

- The arch of my right foot clicks but I don’t think there’s any joint or anything there to click?

Skin changes

- Lots of bruises that I don’t know where they came from

- Spots particularly on chest also more acne on my face than I had during teenage years

- Fragile skin that tears if I take a plaster off

- Purpura and pietache

- Stretch marks on my sides and thighs

Bowel changes

- Swing between constipation and almost loose/ diarrhea

Hair thinning

Slow healing of wounds

Recent additions

- Longer, heavier periods (14 days and bleeding through onto clothes started 6-9 months ago)

- Twitchy muscle thing

- Can feel blood in my legs

- Intermittently feels like I have a UTI for a few hrs then it goes away

- Bone in my lower leg hurts (both sides)

Test results

- Normal pituitary MRI

- Nasal polyps found on MRI

- Normal ovaries (NOT PCOS)

- mild anemia which worsened with heavier periods

- Normal WBC even when ill

- High IgA and IgM with normal IgG and recent EBV infection

- Negative ANA

- intermittently elevated liver enzymes, negative liver antibodies

- Negative HIV

- TSH mid of normal range, T4 on lower end but normal

- CRP normal, ESR borderline

- high Phosphate swings between high and low but usually low and rarely normal

- Intermittently but usually high estrogen, DHEAS, testosterone, cortisol, LH

- Low good cholesterol (slightly), all other cholesterols are normal

- Normal vit D, platelets, urea, electrolytes, albium, calcium, HbA1C, B12

If anyone has any suggestions of things to look into that'd be really helpful.

#Undiagnosed #chronic #ChronicIllness #chronicallyill #searchingforanswers #Gaslighting #Answers #Diagnosis #Testresults #symptoms

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Being undiagnosed is Schrödinger's diagnosis

I'm a physics student at the University of Cambridge and I am living with an undiagnosed illness (which I call Pete).

For those not familiar with Schrodinger's cat, its a thought experiment used in understanding quantum mechanics. If you have a box with a cat in it and release a poison into the box that has a 50% chance of killing the cat and no way of knowing if the cat is dead without opening the box and checking then as long as the box is closed the cat is in a superposition of states where it is both dead and alive.

Being undiagnosed is Schrödinger's diagnosis because it is both

Curable and incurable Cancer and bengin Something serious and not Treatable and untreatable Progressive and constant That scary thing you read about and something much less sinister because you don't know which until someone actually takes the time to investigate properly and diagnose you. It's scary and it's lonely.

#ChronicIllness #chronicallyill #physicist #Undiagnosed #fightingforanswers #fightingforadiagnosis #Gaslighting #Uncertainty #Waiting

11 reactions 3 comments

Proved My Doctor Wrong

For nearly a year, I have complained to my doctor about pressure and pain where my liver is located and he finally gave me an ultrasound, he didn’t really want to because he didn’t think anymore was wrong, but I knew something was and definitely wasn’t normal. The results came back and I have a fatty liver and gallstones. The blood test and urine test came back that my liver has a little damage to it. He’s finally taking me serious after the test results came back. Before he always brushed me off. I hate that I had to go a year with the pressure, pain, and constant appointments for him to finally do something just to find out I was right the whole time. I lost a year of trying to reverse my liver before it’s too late and goes into a much bigger/worse problem and that I have gallstones. I knew the pain wasn’t from my Fibromyalgia… #FattyLiver #gallstones #chronicallyill #ChronicPain #doctorsdontlisten

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To every doctor I've dealt with throughout this whole process: YOU CAN'T PUT A PRICE ON PEACE OF MIND

...And I don't appreciate the social hierarchy gatekeeping.

#chronicallyill #enableddisabled #TheMighty #ijustworkharder

1 reaction

Thankyou, and an update

Thankyou everyone who offered their support when I posted about my normal MRI and frustration from no answers. I went through the same before almost 3 years ago, and it brings back those memories.

Where I live in the UK, my healthcare depends on the NHS, and I’ve had no less than 3 hospital referrals in 3 months, and I’ve had countless hospitalisations and doctors appointments over the past year. It makes me feel incredibly guilty, and also in a way just tired.

I’m tired of feeling ill. I’m tired of gaining yet another issue, or something getting worse. I’m tired of being a bit of a medical mystery with problems. It makes me feel like it’s just health anxiety causing stuff, even though I physically see the symptoms for some problems, have it down on paper and/or have symptoms that make it impossible to function properly because of other problems. I have to keep reminding myself that it is real, and my body can’t fake results for tests that aren’t normal.

I keep comparing myself to years ago. I would never see the doctors, and when I did they always found something wrong. And now it’s to the point where I don’t want to see the doctors and just want to deal with stuff, because I know it won’t kill me, it just depletes my spirit.

I don’t know how much more of it I can take. And it’s why my mind doesn’t want to fight for answers after a normal MRI. I am just so tired of it. And I am also just fed up of using NHS resources for no real result or improvement in my conditions. Someone else could have both instead.

I tried looking into private health insurance, but my amount of medical conditions makes me ineligible for treatment for those. And it’s also expensive. For the first time in 6 years I don’t even have a job, and my benefits have stopped meaning that all my adjustments etc because of my disability now come out of my own pocket/ will eventually have to stop.

Being young is a blessing, but also a curse when it comes to being chronically ill. It’s a blessing because my mind and body can/ should be able to deal with it better, and it can also handle all the tests and appointments and surgeries that I’ve had/ will have to have. It’s a curse because I know things don’t typically get better or go away, and the idea of having to deal with these issues for the next 50+ years scares me, especially as they’ll likely get worse or I’ll get more problems and it’ll make it unbearable.

Sorry for the mess this post is. It’s 6am and my brain is trying to fight a headache.

#ChronicPain #ChronicIllness #chronicallyill #Pain #NHS #young #Thoughts #MentalHealth #tired