Chronic Illness Challenge Day 4

My friends and family have reacted to my various diagnoses differently it all really depends on who we’re talking about. But collectively I would say that the general reaction is ‘sorry you’ve been diagnosed with an incurable illness, but at least the doctors know how to maybe help you now’. And even though I’m really trying to promote awareness of the illnesses that I do have it’s a lot harder than it seems.

Most of my family treats me like a leper basically. It’s like if they don’t acknowledge me then they can just play off all my problems. I try to educate them simply to try and get them to at least vaguely understand what goes on inside my body. I’m not asking them to be able to understand every little thing I say. It would just be nice if they could understand the broader parts of my illnesses.

If your family shuts you out or makes you feel like your illnesses aren’t that important I understand how you feel. And how sometimes they actually try to blame you for having chronic illnesses. Recently I have been told that I wouldn’t have EDS if I ate differently and took more vitamins. For all my fellow zebras out there, we know that that’s just simply untrue we have bad collagen. It’s like regular people are held together by super glue. And then wet spaghetti noodles and tape hold people with EDS together.  

My friends on the other hand are much more open about my illnesses. They try there hardest to understand what’s going on inside me. And they know my limits of things I can and can’t do. And they know when to tell me to stop pushing myself so hard.

Specifically my cousin is my biggest advocate for my health. She grasps my illnesses at the same level as I do and if I was unconscious for some reason, I feel extremely confident that she can provide the doctors with enough information that they won’t accidentally kill me. And having her able to understand what’s going on with me is like a weight lifted off my shoulders.

I feel like everyone should have at least one or two people that understand your illnesses as much as they can. I know it might sound like a pain, especially if anyone else’s families are like mine but just have that one person. You never know, having that one person that understands your medical condition(s) could make a world of difference in an emergency situation. I feel like having that one person is also extremely important if you have drug allergies.