I'd like to preface this post by saying that most people I have come across are nice about my illness. Most people only offend accidentally if ever, usually while trying to hard to be kind. Most people are accommodating and try hard to understand my situation. Most people.
The thing is, the vast majority of people who aren't nice about the illness aren't mean people. Seriously. It's usually just that they don't realise what's going on1. That is why I'm dedicating a short post this week to the difficulties for people with ME/CFS in society.
As I mentioned before the illness lends itself freely to suspicion. In case I wasn't clear in my earlier post, this is how a diagnosis of exclusion works:
You go to the doctor with all your symptoms. They tend to "see how things go" for a while. When you come back with no improvement they start running tests. First they test for everything they think it is. Those tests will come back negative. Then they start testing you for anything it could possibly be, however unlikely. Again it's negative. After all of this your doctor will hopefully come back with a diagnosis of ME/CFS2.
You can see how, with no blood tests or outward symptoms, it'd be hard to convince people that it actually exists. How do you defend it? Why should you defend it?
You're probably thinking at this point that reasonable people don't discriminate like that. If you say you have an illness they believe you. This is true. With an invisible illness like ME/CFS though, people sometimes just don't know there's anything wrong at all.
Let's say you're in a parking lot. You see two people in a car. They pull into a disabled parking space and take out a permit from the glove box. You watch as these two people emerge from the car, laughing and looking as carefree and healthy as can be. Let's say you're using public transport instead. From time to time you see these able bodied young people refusing to give up their seat for someone older. Or have you ever been out and about and seen someone rolling around in a wheelchair one minute, and then casually walking around the next?
You'd probably glare at them, right? Maybe even report them? Before I got sick I definitely would have. These people are taking resources away from someone who might really need them!
On the other hand, what if these people had an invisible illness? Constantly getting dirty looks can really ruin your day. Often in those situations you want to explain yourself, but you can't possibly approach each of the people glaring at you individually. Short of wearing a sign around your neck that says "I'm sick, I swears!" There's nothing really you can do.
As I said before, there are mean people in this world. People who will discriminate for no reason and use resources intended for those in need. These people pop up in all walks of life, but is it really fair to assume that someone is one of those people just because they're not visibly ill?
You're probably thinking at this point that reasonable people don't discriminate like that. If you say you have an illness they believe you. This is true. With an invisible illness like ME/CFS though, people sometimes just don't know there's anything wrong at all.
Let's say you're in a parking lot. You see two people in a car. They pull into a disabled parking space and take out a permit from the glove box. You watch as these two people emerge from the car, laughing and looking as carefree and healthy as can be. Let's say you're using public transport instead. From time to time you see these able bodied young people refusing to give up their seat for someone older. Or have you ever been out and about and seen someone rolling around in a wheelchair one minute, and then casually walking around the next?
You'd probably glare at them, right? Maybe even report them? Before I got sick I definitely would have. These people are taking resources away from someone who might really need them!
On the other hand, what if these people had an invisible illness? Constantly getting dirty looks can really ruin your day. Often in those situations you want to explain yourself, but you can't possibly approach each of the people glaring at you individually. Short of wearing a sign around your neck that says "I'm sick, I swears!" There's nothing really you can do.
As I said before, there are mean people in this world. People who will discriminate for no reason and use resources intended for those in need. These people pop up in all walks of life, but is it really fair to assume that someone is one of those people just because they're not visibly ill?
1 There are some really horrible people who just try to be mean for the sake of it, and a couple of bullheaded ME/CFS-doesn't-exist-and-you'll-never-convince-me-otherwise types but we'll just ignore them for now. Those people would be mean to anyone, regardless of illness or anything.
2 I say "hopefully" because many people don't get a diagnosis for years. A similar process is common for many other invisible illnesses and can be incredibly stressful if it's not caught quickly.
No comments:
Post a Comment