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sharing diagnoses

I sometimes see celebrities, online personalities and even specific folk relevant to a city or local sports club come forward about their illnesses and become representation around that specific disease. I think that's great because it shows everyone that it isn't just a theoretical thing, these people are around us everywhere and it can hit anyone. Lots of illnesses are invisible, and if they hadn't come forward, you wouldn't have guessed.

Now, obviously diagnoses and health status is something very private and no one should feel obligated to share more than they're comfortable with (or at all), but I often wish they would share more than just simply stating their disease. Usually it even comes after everything has been dealt with - they're now fine and happy again and can do everything they were able to do before. They're there to be an inspiring success story. It feels like a very sanitized thing to me, because it puts the symptoms in the past, it leaves out the difficulties around even getting the diagnosis, the months of wait time between appointments, the trial and error of medications until something works. They're standing there back to the best version of themselves (or at least, that is the image they want to portray to the outside) - even if it's a chronic disease that has no cure. They're the lucky ones.

When I know someone else has my diagnoses, it does help and can be relieving to know, especially when their outcome is great and they're 100% symptomfree and thriving. Knowing that's still possible gives hope and reassurance to patients and relatives, and it relieves some of the fear for the general public. "Look, you can get this horrible disease, but everything will be fine and you won't have any long lasting issues whatsoever, since this person was able to continue on as usual too! Don't even sweat it!" But honestly, it is not an accurate representation for many, and I think for many patients it can even be harmful since they're trying to measure up to an idealized version of another patient who may or may not still also struggle but simply hides it, who had different resources and a different disease intensity or progression and whose body is simply different.

Without this context, what I often get from coming outs about diseases is “I got my diagnosis and immediately took a pill and now I am fine”, and it just enables others to go “Well, xyz has the same disease and they go about everything as usual, why can’t you?”. They make it seem as if it’s something you can immediately treat or maybe even cure and just bounce back quick, never talking about residual symptoms, relapses, side effects of medication, setbacks in treatment by becoming resistant, lasting damages, future risks etc.

To me, it would be even more powerful if people not only shared their diagnoses, but also shared what it took to get there, therefore calling out the difficult labyrinth that is the medical system, how they’re managing the disease in day-to-day life, how long it took them to find the right treatment, what symptoms they still experience so both patients and their families have another example of how drawn out it can be and that it takes time. Another person to show them that there are good and bad phases and that there can be longterm issues that will simply not go away.

Sometimes I also wish the opposite type of person would come forward; not the successful powerhouse who is presented as "not defined by their illness", but the type that found treatment that works as well as it can for their case, but is still disabled and cannot work, can work parttime, or only from home; had to give up this hobby or that thing in their life but feels good and lives a happy quiet life. That there was and is sacrifice, but there is also love and contentment. No return to before, but a good life after. Showing there’s no shame about still being sick despite receiving treatment, that you aren't a failure or not trying hard enough simply for still being limited by your disease. That maybe you /are/ defined by your disease and that's nothing bad. It simply is.

As a chronically ill person, you're often confronted with ableist narratives around having to push past your boundaries or else you "let the disease win" or not ask for accommodations because you're supposed to be "a fighter" who isn't "letting their disease get in the way of things", as if it's somehow your fault when it does and asking for accommodations is a weakness. It's all to shame and guilt people into overexerting and exploiting themselves to fit into and be a functional worker in the capitalist system, and the people lending themselves as so-called "inspiration porn" serve a role in that too, as well as the disabled pick-me's who try to keep others from getting accommodations or argue that going the hard way via suffering without much help is a positive because it "makes us stronger/more special" or "motivates us to try harder".

I just fully disagree. You have to prioritize and take care of yourself and not burn yourself out in hopes of seeming inspirational or thinking that honoring your limits makes you weak. If it takes you five times as much energy and effort to do the same things as a healthy person, no one will come out and reward you for doing all that without the help you need, they will just accept your work like everyone else's and move on. There is no prize to be won for achieving what's expected of you while in pain. No one will clap about you choosing to take presence exams instead of online exams at university despite your chronic diarrhea.

Anyway, obviously I want to lead by example.

The most prominent person with Crohn's disease you may know is probably Mr. Beast, very successful YouTube personality. He's very open about being a workaholic and living a very active, stressful life, giving his all and putting everything he can into optimizing his channel and furthering his success. He's a pretty intense person in a very intense, ever-changing field of work and while he has been open about his struggles with the disease as a teen, he's not really talking about or showing any effects of his disease publicly nowadays. So to the outside, it definitely seems like the disease doesn't matter anymore and has not stopped him in any way from reaching a great level of success.

I'm currently not a powerhouse like him. Officially, I am in my first year of this Crohn's disease journey, but I've had symptoms since I was a child according to my mother. I remember noticing it the most during puberty. Retroactively knowing about the disease, my first full on typical, textbook flare of the disease was in 2016/17. My symptoms were assigned to a lot of different things by doctors and myself, ranging from simply upset stomach, allergies, the menstrual cycle, stress, gut microbiome imbalance, etc. but starting December 2023, it got so bad with the intestinal pain that I had to do something. Finally a stool sample in January 2024 got me a referral to the gastroenterologist, who did an endoscopy and colonoscopy in March 2024. This is insanely fast and not typical; usually people wait almost a year or longer. The colonoscopy preparation, the procedure itself and the samples taken sent me into a severe flare of the disease a few days later that hospitalized me with severe bleeding that required a blood transfusion. In the days before that, I was trying out and failing one medication (Budesonide) and then put on another (Prednisone, 40mg, intended to taper down over the next 4 weeks).

At the hospital, I was increased to 80mg via IV and received my nutrition via IV as well. I was kept there for a week, had blood tests done, an ultrasound and later an MRI. They also did some work to start me on immunosuppressive treatment, since you're supposed to test for some diseases like tuberculosis before starting, and make sure the patient has antibodies against Hepatitis and some other things; basically their vaccine status and how it's showing up in the blood. Otherwise, starting immunosuppressive treatment might make those emerge. Sadly they messed up the testing (they weren't a good hospital anyway, lots of stuff went wrong ...) so when my gastroenterologist received all data from them, he had to redo all the testing plus more. That mistake by the hospital ended up delaying my treatment for almost a whole month.

That doesn't initially sound that long, but that is still a full month of me being mostly bed bound at home with inflamed swollen intestines, cramping stomach, very little energy and a lot of muscle loss and difficulties digesting food. The Prednisone kept me from bleeding and out of the hospital, but didn't control much else of the disease immediately plus added its own difficult side effects. Knowing that any immunosuppressive long term treatment usually needs 4-6 months to fully kick in and you likely have to try multiple to find one that works made the unnecessary month long delay even worse to bear mentally.

I was finally able to start new medication (Azathioprine) afterwards and begin tapering down the Prednisone from the initial 80mg to now at 30mg. I kept getting stuck for a while at some mg inbetween because going lower made symptoms unbearable or the tapering itself caused intense withdrawal symptoms at times, so I had to temporarily go back up. At the same time, Azathioprine can be a difficult medication for some and caution is advised in introducing it, so we started it at 25mg with weekly 25mg increases up to 175mg, together with weekly blood tests to ensure it is not destroying my liver, my kidneys or my bone marrow.

Starting Azathioprine usually causes people to vomit, so I chose to take it in the evening with dinner always to sleep off most of the side effects. Each dose increase came with intense bone pain and some kidney pain that slowly subsided, but thankfully I never vomited, my blood values remained okay and I also didn't develop pancreatitis. It did and does still cause me severe hair loss, however. This slow introduction of the drug that is said to show the first effects in 6 weeks and its full effect in 4-6 months means I am currently still not in remission and still experiencing symptoms daily - so this intense disease flareup has been going on for almost four months now and it's unclear when it will be fully under control. That's four months of life just kinda stolen away.

I've had some good weeks and some very good days where I felt completely normal, energized, was able to focus well and exercise; but it's been mostly a struggle of waiting and monitoring everything, living in pain, lying in bed, cancelling on stuff, effects on sleep, having to work from home or call in sick, needing 2 days of rest for each in-office day, dealing with worsening of symptoms simply for walking a bit to the flea market or a convention I attended, debilitating pain from a simple black tea and so on. I can't really plan ahead, I have to take each day as is, and it's been more difficult staying on top of studies and hobbies.

Each day I wake up and I don't know how my energy levels will be, when the fatigue will hit, how the intestinal pain will develop over the day, if the diarrhea or bleeding will be back, how my bone and joint pain will be that day, if any rashes and ulcers will return, if my stomach will start cramping again, how my bladder will react today since it is also being attacked (which is atypical for the disease and is still being explored separately) and I still have severe issues around food. I still struggle with brain fog, moodiness, water retention, moon face, weakness, muscle tremors and cycle issues from the Prednisone as well.

I am lucky that I have a job that is compatible with this - the type of work I do, the ability to do it digitally and from home, unlimited sick days, the ability to go to doctors appointments during working hours, very understanding coworkers and a great boss. I was recently able to switch to 100% working from home for the next 3 months to deal with all of this, because while I tried to come into the office twice a week, it was a struggle and just ended up harming me. I was already assured that it could be extended if needed. Other people don't tend to have this, sadly. Plus, a partner that can take care of me and my household when I need and that can drive me or pick me up from places. Otherwise, I think this would be extremely difficult.

We're still waiting for the Azathioprine to have time to kick in fully since it's only been 6 weeks from the lowest dose and I need at least 6 weeks on the highest, so it has until my next appointment mid-August to do so. If that fails, I will have to start the process over again with new medication - biologics, which involve infusions in the beginning and then usually autopens at home, and also take a few months to kick in. I really hope it works out though, because any month longer in this state is too long and I also really want to get off of the Prednisone and I want my life back, consistently. It feels awful to have good days just to have them randomly ripped away from you again for no discernible reason - not the food I ate, or the things I did, just random disease fluctuations.

Even when the Azathioprine ends up putting me in remission, I still have to deal with side effects, will still have to recover from months of Prednisone use, possible disease fluctuations can still happen, and I'll have to hope it continues working in the future since disease progression can make medications ineffective (or in the case of biologics, you can become resistant) or I might have to stop it for other reasons. So I might become 100% symptomfree, but it's not guaranteed to last either.

To tie it back to the original point - from exchanges with other IBD sufferers, I know this is a pretty typical development and most take even longer to get diagnosed or access any type of treatment, and cycling through treatment options with each taking months to see any effect means literal years down the drain. It's easy for success stories to warp our perception of diseases, especially chronic ones, as these things you are diagnosed with, receive immediate attention for and it just kicks in on first contact and you're back to normal and they have no drawbacks from it all. But realistically, it takes a lot of time and effort, and it can be debilitating and temporarily, if not chronically, disable you and it will define you and your life in some way; it will change how you think about things, what you prioritize, your limits and needs, and it's a bit disingenuous how many success stories inadvertently pretend it isn't so to make other people feel more comfortable and reassure everyone they're not a "burden". More representation of the realities of the diseases is needed.