Explaining Ourselves

One of the most impactful health quotes I have seen within the last few years is this:

"The worst thing you can do to a person with an invisible illness is make them feel like they need to prove how sick they are."

This is perfectly accurate.

There is so much doubt, there is so much questioning, and there is so much judgement around illness in general, and especially around illness that is not visible.

***
How sick can you be, you don't look sick at all?
Do you really need that cane?
There is no way you have that disease, you seem fine!
That illness is really rare, it is probably a misdiagnosis!
He definitely doesn't have that - I have never seen him have ANY of the symptoms!
She was just out with friends last week, she can't be that sick!
If she's on chemotherapy why does she still have her hair?
If she had really that disease she would be in so much more pain!
I thought people with Crohn's couldn't eat that, do you not have it anymore?
Well I know what your doctor said, but did the bloodwork show anything?
How can they diagnose something if they haven't done any scans for it yet?
Are you sure that's what your doctor said?
Why would you ever go to a movie theater if you suffer migraines all the time?
I saw you using a walker a few months ago, why aren't you using it today? Are you better?
I have the same disease as he does and it definitely does NOT hurt as bad as he is saying it does. What a liar!
My friend's mom has that disease and she said that there's no way a person with that disease would be able to do what he is doing!
My disease went into remission by adopting a plant-based diet. If you try that diet you'll be fine. You're just not trying hard enough!
Well she obviously isn't taking care of herself if she is still so sick!
Why can't he just snap out if it?
She has been bitchy for months... like, get over it already it's not like there's anything physically wrong with her!
Why are you on THAT medication? Isn't that medication supposed to be for something else?
Omg I saw him yesterday playing golf. Pretty sure he's fine. There's no way he would be bedridden one day and golfing the next, that's impossible!
***

These are very baseline examples of the myriad of comments that are exchanged on a daily basis. The constant questioning and judgement. Of course there are hundreds of thousands of people who are supportive, but the condescending people are always just so much more vocal aren't they?

This got me wondering - why do we even feel the need to entertain all of these questions? Obviously there are situations where others need to better understand our predicaments - employers, teachers/professors, sometimes clients, medical insurance providers, pharmacists, colleagues, partners, children, parents, close friends, and of course our doctors and specialists.
But the woman coming out of the grocery store glaring at your handicap sticker then proceeding to shake her head - it is none of her business. The man in the elevator in the wheelchair who asks you why you aren't taking the stairs because you are so obviously young and healthy - none of his business either.

I think that we often want others to understand us and our situations so desperately that we crave the acceptance of every individual we come into contact with. When we feel that pang of doubt, we automatically assume that if that one person doubts the validity of our diagnosis, that it will somehow get back to people who can have an effect on our daily lives. It is true that in the medical world if one doctor expresses a lack of concern or vocalizes their doubt, that can become a black mark on your chart that will follow you around for years... but some random person who looks down his/her nose at you because they don't believe you? Yeah, in the grand scheme of things, they do not matter.

I am particularly guilty of wanting to be accepted, understood, and believed, right away. It stings even feeling that someone MIGHT perceive me as deceitful. As many of us have, I have had rumours spread about me faking an illness or faking the severity of an illness. I have been scorned and sneered at. I am also, sad to admit, guilty of some of the above judgements. I also need to remember that my opinion does not matter and that it is none of my business. There are certain 'rules' that I expect people to follow - like parking in a handicapped parking stall only if the vehicle has a placard. Otherwise - it is not up to me to decide who is ill enough to qualify, so why should it matter? I am much less likely to give the benefit of the doubt to someone who is unnecessarily rude to others or utterly inconsiderate, but even if someone on the train does not stand up to give up his/her seat to someone who is elderly, using a walking aide, or very clearly pregnant or struggling, I hope that there is a valid reason and I try to curb my own judgement.

In my opinion, the random people who 'deserve' an explanation are those who ask out if sheer curiosity and compassion. I enjoy explaining my illnesses to people when they ask politely. I am grateful that there are people who wonder in general, without any predisposed prejudices.
The rest do not need to know and are in no position to be so snarky about it. They are not worth the time and effort it takes to worry about whether or not they believe you. I mean, even in the hospitals, when they see a certain diagnosis on my chart I usually have to explain that it has been verified by SEVERAL different specialists across the country. I always write down the names of the specialists who made the diagnosis ahead of time just to skip over that 'there-is-no-way-you-have-that-disease'-stare. Wash your hands of the nonsense and focus on what you are doing - because we are all doing the best that we can in the circumstances in which we find ourselves. We are all struggling. We are all in pain of some kind. We all deserve compassion and understanding.

So why do we worry so much?