[Image shows 3 spoons laying on a laptop keyboard. Overlaid is a clipart of torn notebook paper with a red paper clip. On the paper reads in black text, “Being Sick Doesn’t Exclude You From Ableism” with a pink and white daisy over the text. At the bottom of the banner is the URL for Thee Crohnie Grace Blog.]
I think it is important to address the term ableism before I discuss the rest of this. Ableism is discrimination against disabled people. This can be in the form of words and actions. In the form of telling people what they should be doing, insisting they aren’t doing enough, things such as “others have it worse”, not making things accessible, etc.
Now to get into the topic at hand. Just because you are chronically ill or disabled, does not excuse you from being ableist to other chronically ill or disabled people. I see this happen a lot in support groups, far more often than it should, and I’ve encountered people as well who seem to have an issue with it as well.
Support groups are supposed to be a place where people can go and express their concerns and fears and get support, but lately I’ve been noticing something different happening. People are trying to one up one another, people are ignoring what the original poster has said they have already tried and insisting they try something that they either already have tried or cannot try, the need to try to seek out and out fakers in the community, and the people who have conditions mildly and want to jump straight to last resorts because they think it’s the only way to feel validated by the community.
I have encountered people who feel they get to police the thoughts and feelings of those, “You should be lucky your doctor gave you a feeding tube, I have lost 20lbs in the last 6 months and my doctors won’t do anything.” (Yes a message I have gotten before).
I’ve had people message me things like, “I wish I could get that sick again so I could lose weight.” or that since I’m young I should be healthier than someone who is older and sick.
I’m typically used to hearing some of these things from people who do not deal with these issues on a daily basis, but it hurts much more when it is people in the community that are displaying this same behaviour. Things such as people in support groups saying they would rather die than have a tube on their face, or have to get an ostomy.
Then you have the people in the support group that had some miracle happen for them and they swear it will cure you and solve all your problems, like a change in diet, new supplements, exercise regime, etc. And they often become pushy about it, and then will say things like “Well if you’re not willing to try then you don’t really want to get better.” When really those things are just not scientifically supported and I trust my doctors more than a random person online.
Now to discuss the one upping and trying to belittle someone’s struggle. In support groups it seems that when someone talks about something struggling to them, there always seems to be one comment that is something along the lines of “Oh yeah, I have that but I have it worse.” Or when someone does something despite their illness they tend to get the condescending response of, “Oh wow, you’re so much more productive than me. I don’t know how you can do it. I could never do that.” Insinuating that you must be so much better off than them because you did something, but some people do not have the choice but to push through the pain. I know so many people who probably shouldn’t work but they can’t quit no matter how bad things get because they would lose their insurance or their home.
And now for the big one: trying to out fakers in the community. Ever so often someone will be outed by family or get caught up in their own lies and you will discover that someone lied about having an illness, for what reasons, who knows, but it has happened a couple of times now in my time in the community. While it is terrible that it happens, it has made people very skeptical of everything. People began to look for every inconsistency in someone’s story, looking closely and over thinking posts, until they start to think that so-and-so is faking their illness and must be outed. When more often times than not, any inconsistency was a mistake made by too many pain meds or brain fog.
This need to find the fakers, is a toxic thing in some communities. It pins people against each other, causes more stress to the person in question who is already having a hard enough time, and can even lead to stalking. I had a friend who was in the hospital and people in a support group began to stalk her, calling her hospital and trying to find personal information on her because they got paranoid, all over a small mix up of terms.
This kind of behaviour should not be acceptable in support groups, we are supposed to be here to lift up, encourage, and help on another. More often than not I find myself leaving support groups or unfollowing them because of the unnecessary drama that a handful of people will cause.
Being sick is not a contest, everyone’s suffering and struggle is valid, everyone’s feelings are valid, we should try to be more understanding and supporting and stop and ask ourselves, “How would we feel if someone said that to me?” And if you would feel bad, then you shouldn’t say it to someone in the community. It’s like the golden rule of treat others the way you want to be treated. Just be nice, it’s a hard enough time as it is without everyone tearing each other down.