patient support groups

07 Feb, 2025

When my Crohn's disease diagnosis was new, online groups focused on inflammatory bowel disease were my lifeline. Just seeing I'm not alone, having some answers 24/7, people who understand panic spiraling about some things and can also reassure you. There was a lot of info on meds and what to look out for, and how to cope with certain things. I would still recommend anyone dealing with a new diagnosis to do join something like that.

After a while though, it wasn't really beneficial to me anymore and I chose not to get stuck and instead moved on. It can be sad, because it will inevitably mean you lose contact to quite a few people (especially if all you have in common is the illness) but I also think it's a great milestone and important to do. At the start of a new diagnosis, it's everything. Years of suffering now makes sense. Memories bubble up. You feel validated. You read others talk about the same things you went through and think wow, I'm not crazy, I didn't make it up!. Until you find relief, it dominates your life and is a big part of what you talk about. I mean, a big chunk of my 2024 posts were about my health, and until recently, the health FAQ was in the navigation bar, so it definitely was very important to me.

But once you know everything there is to know, have found relief and are in good hands, it's okay to give it a small role in your life again. After months of it defining your every waking moment, it can be weird to suddenly be 'free' and not think for hours or days about your illness. Unless something goes wrong, that's likely what will happen and is the goal. You deserve to live a mostly normal life without constantly perceiving yourself as the sick one and making it your personality. It's healthy for you to not have to constantly think and be reminded of your illness and just live life.

I admire the people who stay to help the newbies, but I decided for myself that I couldn't. At some point, you see the same discussions and topics over and over and over again, and you write the same responses. I'm not good at that.

There's also the problem that medical issues and desperate people are a beloved target of grifters and liars, and desperate people will lash out at you if you don't accept their holy grail. Patient groups and sellers of supplements, weird diets and alternative medicine are like moths attracted to light. People want easy fixes, especially if these fixes are also affordable and with less or no side effects, so they get exploited. I hate seeing that, especially because I work in pharmaceutical regulation and have little patience for medical misinformation¹.

So depending on how good moderation is, these groups have a constant influx of grifters and people that fell for them, and my patience is thin on that front. There are also diet changes I made for my illness, even before my diagnosis and meds, but you don't see me walking around preaching it like a cure Big Pharma doesn't want you to know about - because it isn't. There are lifestyle changes you can make that help, and that can support remission or temporarily put you in remission, but a degenerative autoimmune disease can and will progress silently and one day it will not be enough. The people who are reassuring you about medication they have been on for years aren't pharma shills, they just know that once parts of your intestines are gone, they're gone, no replacement possible, and they want you to keep yours. This shit can kill you. Not only that, but the foods people struggled to tolerate were very diverse and what some tolerated well would put others in the hospital. So entering some patient group and going "What's up fellas, are you fucking stupid sheep taking medicine? Because if you were smart you'd only eat meat for the rest of your life and cure this disease!" will automatically land you on my shit list.

Frankly, I got tired of seeing this type of person, and I also got tired of the people that are entering groups like: "Help me! I'm fucking suffering and bleeding constantly. What can I do to enter remission? Except medicine or giving up my alcoholism." Like, what do you seriously want to hear? Oh yes, please travel to the faerie circle in some remote town in Sweden to receive a cure from the forest elves, or what? "I don't want biologics, I have looked into the healing powers of turmeric." Well good luck then and all power to you, but if I see that one more time, I will flip. It's not like I don't understand their motivation... I want them to be well and I know they don't mean to be annoying or disrespectful. They're just scared people in denial who may also live in places where one injection costs thousands and they're scared of the side effects. But it just wore me down to see and there is only so much arguing-about-treatment I have in me. It's your life, do what you want and don't ask for permission and validation if you're not interested in the answers.

Something else that bothers me in more general, broad support groups for the chronically ill and disabled is that the scope is too large to the detriment of a lot of people that are supposed to find help there. This usually affects sub-groups or channels for inclusion at universities, workplaces and more. I haven't found value there for months as well, until I gave up and left. In my experience, the mental aspects get discussed a lot more because they are far more relatable.

No one will be interested to talk about wheelchair accessibility of a place, or getting extensions for assignments, or getting the option to write exams somewhere else or online because of physical issues - instead it's the same 6 people with ADHD talking about being unable to focus. And I think this gets more traction because a ton of ADHD symptoms are very relatable to even non-ADHD people, since the severity is what makes it debilitating, and everyone has something to say about having no motivation or focus for a task. But I just wonder who it serves, aside from being a vent channel for ADHD people, because surely the normie advice I see in there about reminders and alarms and asking others for help is something everyone with ADHD has thought of before. If it would help, they'd do it and have no problem. I just find it ultra alienating that all inclusion is about in many places is apparently just about telling ADHD people to use their brains more. There was no space or advice to deal with the things I detailed here.

So, after no new knowledge to gain, being comfortable in remission, wanting to think much less about it and running out of patience for certain repeated topics, I left it all. It's still there in case I need it, but for now, I'm good.

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Published 07 Feb, 2025

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