People judge books by their covers. We make assumptions every day, based on what a person is wearing, if they have acne or not, if they are attractive, etc. That’s the hardest thing I have to face when it comes to interacting with people while chronically ill.
I have POTS click here for more information. Although I could be in unbearable pain, I look perfectly healthy. Most people would say this is a blessing, and sometimes it can be. I can go about my day without people constantly asking me what is wrong and if I am feeling okay. That makes it easier to ignore the pain and think that I am “normal.” But there are times when I wish the pain I was feeling was reflected in my appearance.
I fly a lot for school. And flying, of course, makes me sick. I’m lucky like that. When I have to take a shuttle I sit down.
What people see: a perfectly healthy 20 year old taking up one of the few seats that could be taken by someone who could really use it.
Reality: a 20 year old who is on the verge of puking, sitting because she feels faint and wants to avoid passing out, trying to breath slowly to slow down her rapid heart rate, trying to avoid peoples stares
You can see that the difference can cause some confusion.
I have been called lazy, inconsiderate, and many other things. I used to not take the seat. I would stand and push through it, making myself sick in the process. It has been a new revelation that I need to take care of myself as much as the next person. So, if I need a seat, or heaven forbid a wheel chair, I am going to use them. Because I know I need them, people can stare and judge all they want, but I know what I can and can’t do.
I used to see myself as weak, because of all the accommodations I now have to make so I can function. I would push myself to be just like everyone else. I wore three pairs of compression socks and leggings so that I didn’t have to be the only person sitting in my lab.
I’ve moved passed that mindset. Now I take the seat, because I know I need it so that I can focus on the lab and not passing out. I am open about my illness. If people have questions I try to answer them the best I can. I don’t mind people asking questions, in fact I encourage it. I would much rather have people ask me why I am sitting than stare and wonder.
If you are someone with a chronic illness, do what is best for you. People’s judgement can hurt and become annoying, but remember how much energy it took for you to get up today. Praise yourself for doing the little things. Some days all I can manage to do is brush my hair, I don’t even get out of bed. Instead of thinking “all I did today was brush my hair” I try to think “I managed to brush my hair today. I did that all on my own, through the pain. I rock!”
That change in mindset can be hard, and it takes time, but I have faith you will get there!
Keep your head up!