Various people standing and coming out of large smart phones. Two people have megaphones and are aiming them at a person in the middle of them.

The Problem With Saying “I Never Let My Illness Stop Me”

This past week, I saw a widely shared tweet by someone talking about how harmful it can be when someone loudly and proudly proclaims that their illness or disability never stops them. I was happy to see so many others agreeing with it; I agree with the sentiment so much that I thought I should bring it up here. Someone saying that their illness/disability/pain/whatever doesn’t “stop” them isn’t at all positive, it’s cringeworthy, ableist, insensitive, and does tremendous damage to others with that condition.

MS and positivity problems

I’ve spoken before about how I detest what I like to call “positivity porn”. I know some people need a boost and benefit from it, but I prefer a more realistic approach. When people say they don’t let their disease stop them, I’m reminded of when people say that MS “doesn’t have them”.

Saying these types of things are not inspirational, at least, not to the people that actually suffer from the condition. Those types of statements are bragging, pure and simple. Great, you have the same disease as me, but you ran a 5K. Yay. Not only does it seem like bragging to me, but it also seems like a gigantic jinx too. I was still training for marathons daily after I got MS, but problems tend to creep up on you the longer you’ve had the disease. When folks spout these kinds of things, the first thing I think to myself is “damn rookies”.

Why is it insensitive?

The reality of MS is that everyone experiences it differently. Some people won’t really experience severe problems until later in life and some will always have a mild course of it. At the same time, some people will be incredibly debilitated from the very beginning. I can’t even begin to tell you how incredibly awful it is to be severely affected by this disease and then to hear someone say that they don’t let it stop them. As if they chose it and willed their way past it. What utter and complete bullshit. They didn’t “will” anything, they aren’t tougher than anyone else, they didn’t do anything special, they simply got lucky. The problem is, even if you know that, when you hear someone say it, it creates doubt, it creates guilt. It makes you question yourself and makes you think that this disease is your fault (IT IS NOT YOUR FAULT).

Promoting unrealistic expectations

To me, one of the worst problems of people going around and saying that they never let their illness stop them is the unrealistic pressure it puts on everyone else who has a more severe course of the disease. The folks who love to say this sort of thing will tend to say it often and loudly. This has an effect on everyone else with the disease, it makes people who don’t suffer from it think, “Well, if one person can will themselves past it, why can’t everyone else?”.

It makes others with the illness look lazy instead of sick. It makes people think we are faking. The average person out there doesn’t know enough about the disease to understand that everyone is different, so we all get lumped together. When you say that you don’t let your illness stop you, you are saying that you are better than the rest of us, that everyone could beat their illness if only they tried a little harder (again, what insane bullshit).

Words are powerful - Choose carefully

It will be easy for some to think I’m being overly sensitive here. In the past, maybe I would have agreed with you, but I’ve lived with this disease too long now and I’ve witnessed the effects of people talking like this. We live in a world where there are too many “influencers”, people that use their illness, or whatever they can, to say “hey, look at me!”, instead of actually trying to help others. Proclaiming that you never let your illness stop you doesn’t help anyone but yourself (and maybe your follower count).

It isn't inspirational, it’s insensitive, and it sets the rest of us back. This isn’t about simply making others feel bad, you are legitimately setting unreasonable expectations for so many people that are suffering. Be happy that your course of the disease isn’t as bad as others and please realize that it had nothing to do with you. Remember that your condition can change pretty quickly too.

Thanks so much for reading and always feel free to share! As always, would love to hear about your experiences in the comments below!

Devin

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