After 3.5 years of having an invisible disease you never really get over the judgement that comes along with it.
If you saw me out and about you would never know that anything was wrong with me. Which is good, but also frustrating.
If you saw me parking in a disabled spot, let’s be honest, you’d be looking me up and down, judging. “She’s young, she doesn’t need that spot!” “Oh I bet that’s not even her disabled sticker, she’s just lazy!”. The judgement is there. A 25 year old, healthy looking person using a disabled park. It is rare, and I mean rare, that I will actually use a disabled park. But if I do, it really means I need to. It means I’m in a lot of pain and each step I take causes pain through my entire body.
The hardest judgement I find is from those who know me and do know I suffer from MS.
And look, I completely understand that not everyone is going to be able to wrap their heads around the disease and how unpredictable it is. That is why I’m always happy to educate people on it. But, at the end of the day, it’s up to them if they want to actually absorb the information or not.
The judgement from people who know you is tough. Things like ‘Oh, well she went out today, she must be better’ and ‘but you were fine yesterday afternoon’ hurt. Me being able to function at half capacity for one afternoon or day, does not make me ‘fine’ or ‘better’. It just means that I finally built up enough energy to do something.
Even when people tell me things like ‘Blah blah has MS and they’re absolutely fine’ or telling me what Blah Blah does that helps with their MS and that I should try it, makes me feel a little judged. I know some of it is meant with good intent, and I’m not saying I don’t want to try different things to manage my symptoms to try make me feel better! But, every case of MS is different. There are no identical cases.
So just because x worked for blah blah, doesn’t mean it will work for me – and that’s the hardest part. When people know more than one person with MS, it’s hard for them to not compare the two, and I know a lot of judgement comes from that.
I am usually a person who doesn’t care what people have to say about me. But when it comes to being judged about an invisible disease it really plays on my anxiety.
I know things will never change with that. People are always going to judge people. It’s just the way it is.
But if people can try to understand more about invisible diseases, then I think it would make a world of a difference. Not just for me, but for anyone who feels judged about their illnesses!