When you experience something for a long time, like pain (physical or mental/emotional) or exhaustion or difficulty doing or understanding something, you don’t necessarily realize the extent to which it’s affecting your life.
I did not realize how much pain I was in, and how fatigued it was making me, until I took effective pain medication, and could suddenly function and think clearly.
I didn’t realize how much it sucked to have your legs regularly collapse from under you until I started using a cane, and no longer fell down several times a week.
I didn’t realize how much dysphoria I had until I started binding. (I still don’t, probably. If I start HRT, this could very well happen again.)
With so many things, you don’t realize how much they are affecting you until they’re gone, even just for a little while.
So when you go to the doctor as someone with a long-term condition, communicating your symptoms is almost always going to be difficult. You don’t necessarilly know what things might be symptoms.
This is one reason self diagnosis tools can be valuable. Until I researched fibromyalgia, I didn’t realize that bumping lightly against things is *not* supposed to make you feel like you’ve been bruised.
What makes things decidedly more difficult, though, is when doctors–and anyone else, for that matter–make you feel like you should “push through it”. When they make you feel like you’re exaggerating. When they make you feel like you’re making a fuss over nothing. “Everyone feels that ways sometimes,” they might say, for example.
When doctors take this attitude, it makes their chronically ill patients doubt themselves. It makes it harder for them to identify symptoms. It makes it harder for them to tell their doctors things. It makes the voice in our heads that says “you’re making a fuss over nothing, everyone feels this way, you should just push through it” louder. And not just with chronic illness, but with any long term condition.
(Incidentally, with many chronic illnesses, “pushing through it” is one of the worst things you can do, and may make your condition considerably worse.)
Not everyone is in pain all the time. Not everyone is tired all the time. Not everyone cries every day, or even every week. It is hard for me to say this, because it is difficult for me to imagine a life like this. Many of the people I am closest to are disabled in some way. But I am pretty sure it is true.
If you are in pain (physical or emotional) or exhausted or crying all the time, something is wrong. And it isn’t that you’re weak, because that isn’t how this works. And if it is…well, so what? If it is, somehow, the case that everyone feels this way, but tolerates it better than you, that makes no practical difference. You do not deserve to feel that way.
And if you work in the medical field, you need to know this. You need to understand that these are messages your patients are sent by society. Maybe by you. You need to understand that these are difficulties they may have in communicating their symptoms to you. It is your job to help them to the best of your ability, and you will not be able to do that if you don’t understand where they’re coming from. And yes, not all disabled/ chronically ill people are the same, and some of them will be affected in different ways–but from everything I have seen, my experiences in this area are far from unique.
(Incidentally, if you are an educator, you should also have some understanding of this. At some point, you will have disabled students.)
jacobvanloon
