Why I sometimes don’t like to identify as part of the chronic illness community

Anonymous

For my entire life, I’ve been dealing with a number of chronic health conditions. At first it started with the common conditions such as asthma and eczema. Then it turned into some lesser known conditions. It’s hard to describe the feelings you experience when you have chronic health conditions, especially when they’re not visible. So it makes sense to look to the internet to find places where you are better understood. At first, the chronic illness community seems like a nice, welcoming place where you feel at home and you can get support. A lot of the time, you do get that support, which is great! However, after years of being involved in this imagined community, I’m finding it hard to identify with it and here’s why.

Woman scrolling on her mobile phone
Woman scrolling on her mobile phone

Competition

Something others have noticed in the community is competition. Instead of supporting one another, people will often leave comments saying that their symptoms/experiences are worse than the person who made the original post. It really can be a case of who’s the sickest and thus more deserving of attention and support. There’s a lot of gate-keeping too. They may not think you’re really sick or even have a diagnosis if you do something they’re unable to do.

As well as the competition, a lot of posts where people are asking for support/advice are hijacked by people talking about their own experiences/symptoms, even when it’s not relevant. I understand that this is perfectly acceptable in some situations/types of posts and some people do ask for people’s experiences of something. However, this slowly bleeds into a competitive atmosphere and they often go off on a tangent, consequently not really helping the person who originally made the post. You rarely see this on other types of advice/support posts, because it’s not always helpful.

The celebrity "advocates"

Lena Dunham pictured before she announced she had EDS
Lena Dunham pictured before she announced she had EDS

Lena Dunham has claimed to have EDS. It was briefly hailed a small victory because this is a (kind of) celebrity who could bring some awareness to the masses for the condition. But, if you know of this woman, you know she’s got a history of being, well, not the best type of person, like saying she wished she had had an abortion so she could have a meaningful debate about its stigma. Or when she accused a woman of lying about being raped, and then blamed the patriarchy for making her say it. There’s also rumours that she touched her younger sister inappropriately. Anyway….

For some time, Jameela Jamil has been hailed as the celebrity advocate for the same condition. She’s been in the midst of a debate regarding her health conditions and the inconsistencies with her stories. I’ve tried my best to look at these allegations with an open mind and wish to believe her fully, but it’s hard to do so with so many inconsistencies. I don’t wish to go into this too much though because everything is still up in the air and no-one seems to know what to think.

Why I sometimes don’t like to identify as part of the chronic illness community

Sia recently came out about her health problems and again, the chronic illness (CI) community were happy that such a famous singer was bringing attention to these conditions. Unlike the previous two celebrities I’ve mentioned, Sia didn’t do anything wrong, except she formatted her tweet slightly wrong;

All of a sudden, news everywhere were quoting this tweet directly or misinterpreting it (it really highlighted how little research these news tabloids do before posting a story). The problem was, it looks like she’s saying EDS is a neurological condition when it’s actually a connective tissue disorder. She did correct this afterwards but by then, the headlines were out and they didn’t care to change them. I believe there are still articles about this news that still state it’s a neurological disorder. This doesn’t help bring the right awareness to an already misunderstood condition!

Damaging reputation

There are corners of the internet that aim to point out people who are faking illnesses. Unfortunately invisible conditions are easy to fake and 'Munchhausen by internet' is now a thing that seems to be more common than we realised. Whilst I understand why people wish to point out people who are faking, thinking that it will support those with the conditions they claim to have, it leaves an online trail. This means that if people look further into these largely misunderstood health conditions online, there’s a chance that they will ultimately come across these pages and start to believe that the majority of people who say they have these conditions aren’t being honest. They may think the conditions are incredibly rare so anyone they meet who claims to have it is lying, even though the community is trying to get the message across that these 'rare' conditions aren't as rare as first thought.

Quite a high number of people who have the conditions that are regularly being faked online, sometimes find these communities and feel quite hurt and offended by comments made by people who don't have or fully understand the condition. More misinformation is subsequently shared, to the detriment of the mental health of those with the condition who often suffer from imposter syndrome.

Charitable problems

The EDS Society has received some back-lash for a number of things. For one, they seem to support Lena Dunham, which is one thing, but when the community spoke up against posting things about her, the charity began to remove comments and eventually turned comments off, ultimately silencing everyone. They also liked a comment made by one user to another that called them a ‘cyberbully’.

The EDS Society seems to refute any kind of idea or evidence that could suggest that EDS isn’t as rare as it’s claimed to be. (Most) people with the condition want the condition to be seen as not rare because that means doctors will be more likely to investigate it and more research can be done. So for the EDS charity to try to go against that goes completely against what those with the condition (the people they advocate for) want.

Everyone is too sensitive

People seem to be very sensitive to any kind of criticism in the CI community. A lot of posts are written in a way that encourages nothing but agreement and confirmation. Someone may post about thinking they might have a health condition, for example, and it seems everyone agrees with them 99% of the time. If you disagree with them in any way or suggest something else, some people seem to take it as a personal attack/criticism. They tend to respond sarcastically, not open minded and assume you’re being hostile. What kind of community is it and what progress can be made if no-one can consider an alternative thought/contradiction?

In addition, some websites become a wormhole for mindless support. I won’t name the particular site, but there is one that allows health related articles. Many of the articles I’ve read have been from writers who are trying to create a problem or discrimination where there is none. After all, there’s only so much you can write about chronic illness when everything else has already been written about. What bothers me most is when you go to the comments, you expect people to see what you’re seeing; a totally biased article, with an agenda to perpetuate hate against outsiders who “don’t understand” chronic illness. But people are mindlessly supporting it, believing that the smallest inconvenience from someone must mean they’re being discriminated against. Basically, these writers are ill informed radicals who have some kind of vendetta against everyone. This just makes people bitter and they absorb all of this information and assume everyone who disagrees with them is discriminating against them.

The nicknames

“Spoonies”, “aspie”, “zebras”, “POTsies”, “[condition] warrior”.

These are a few of the nicknames used to describe people with health conditions. Initially, it’s quite nice to have playful nicknames to acknowledge a group of similar people. But after a while, I find it starts to feel quite childish. I also find that people start to absorb these labels as a big part of their identity and they almost become their health conditions and there's nothing more to them personality wise. They become advocates and start seeing everything as discrimination when it often isn't. Some even go out looking for fights with people to show the injustices disabled people face and unfortunately their behaviour is supported by others.

Though I appreciate that health conditions can take over our lives, it gets weird when you start labelling yourself as a warrior on every social media account and it becomes your whole personality. In doing so, some wish to be seen as special and different, but that goes against their goal of trying to get disabled and abled people to live more harmoniously. If you treat yourself like an outcast, you’re going to get treated like an outcast.

As a result of all of these issues, I find it harder and harder to advocate for myself and my needs or inform people in my personal life of my health conditions because now I feel that they will connect me to this community.

I don’t want them to think of EDS and then think of Jameela and her inconsistencies, which will subconsciously reflect on me. You just have to look at the tweets to see what people’s true feelings are about her.

I don’t want people to think of me as someone who posts on social media about being a “spoonie warrior” or arguing with people about who is the sickest. And I don’t wish to come across as some over the top radical who has created an identity around my health conditions.


All I want is to come across as a normal person who just so happens to have chronic health conditions, to be taken seriously and to lead as normal a life as any. But right now the CI community seems to be more detrimental, than beneficial. If more people within this community could see this and those who already do see it, spoke up, maybe we can work together to stop these issues from happening.

Further reading: https://www.medicaldevice-network.com/features/online-chronic-illness-communities/

Why I sometimes don’t like to identify as part of the chronic illness community
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  • OlderAndWiser
    The problem with chronic health conditions comes down to identity. Yes, you have MS, or whatever, but you are still a human being and have all the other pluses and minuses of being human. Identify as an MS patient and that is how you view yourself. It is a very self-limiting thing to do. Identify as an MS patient and that is how others identify you, as if MS controls every second of every day, controls everything that you do.

    Chronic health patients have a tendency to see themselves as invalids and live their life complaining and refusing to participate in the line happening around them. There is a high divorce rate for these people, not because their spouses don't want to honor their voted about "in sickness and in health," but because the sick spouse too often stops trying to be a good spouse, stops making any effort, and just wants to be the center of attention.

    I was married for 17 years to a woman who was diagnosed with MS two years into the marriage. It was hell, and she ended up divorcing me after I had her committed to a psychiatric facility.
  • not329446
    I'm one of these people but I post nothing on such sites. I agree with little to none of your post. If some part of your condition is visible you excited fear and ignorance in people. This includes those in medicine. Part of my issue is they cut out my tongue and left me sucking air through a hole in my neck. I've seen fear in faces as I approach people. I had a woman stop and start backing up until she fell on her ass. I just smiled and walked on. A lot of people on the ci community are actually screaming for help. The general public is ignorant and the medical community is no better. Nurses often assume that because I can't talk that I am also deaf. I had a respiratory nurse put an oxygen mask on me and failed to figure out why I was fighting it. I breath through my neck. What is a mask over my mouth going to do.
    All you want is to come across as normal?
    You can't fix stupid!
    Your medical condition makes you a freak to be feared and misunderstood by all the world. Unless you can find a way to fix stupid you will never come across as Normal.
  • Anonymous
    I suffer from an invisible chronic illness, and from the get go, I wanted no real part in the community at large, but was persuaded to sign up and participate. When first diagnosed I was self-isolating and depressed, *classic*, and my family felt like I needed people who understood what it's like. So they turned me on to support groups, but they turned out to be terrifying places where people divulged how bad it can get, and each story was worse than the last. Not really the thing you want to hear DAY 1. Obviously, once diagnosed, you can't go back, but going to meetings and hanging out with "these people" only made me feel like all I was, was my illness, because that's what you talk about. That's the purpose, but it left me worse off, so I ditched them and found outlets in unrelated groups that still don't know I have a chronic illness, and I prefer it that way. I don't like or want looks of pity when I mention I'm ill or need to take a break or have a billionth doctors appointment. I have no desire to be a spokesperson people point to as some type of shining example of what it's like to live with chronic illness like an animal in a cage. We are forced to deal with what we all deal with living with chronic illness, but you handle it the way you see fit. Some people need the embrace of that community and others do fine without it.
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