When you experience something for a long time, like pain (physical or mental/emotional) or exhaustion or difficulty doing or understanding something, you donât necessarily realize the extent to which itâs 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 didnât 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 didnât realize how much dysphoria I had until I started binding. (I still donât, probably. If I start HRT, this could very well happen again.)
With so many things, you donât realize how much they are affecting you until theyâre 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 donât necessarilly know what things might be symptoms.
This is one reason self diagnosis tools can be valuable. Until I researched fibromyalgia, I didnât realize that bumping lightly against things is *not* supposed to make you feel like youâve been bruised.
What makes things decidedly more difficult, though, is when doctorsâand anyone else, for that matterâmake you feel like you should âpush through itâ. When they make you feel like youâre exaggerating. When they make you feel like youâre making a fuss over nothing. âEveryone feels that ways sometimes,â 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 âyouâre making a fuss over nothing, everyone feels this way, you should just push through itâ louder. And not just with chronic illness, but with any long term condition.
(Incidentally, with many chronic illnesses, âpushing through itâ 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 isnât that youâre weak, because that isnât how this works. And if it isâŚwell, 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 donât understand where theyâre coming from. And yes, not all disabled/ chronically ill people are the same, and some of them will be affected in different waysâbut 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.)
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