Young people are "supposed" to be healthy. We aren't supposed to have health problems, and we sure as hell aren't supposed to have chronic health problems that will never get better because there is no treatment. Our society tends to think of illness in terms of you treat it and you either get better, or you die. There isn't a good fit for chronic but rather stable illness, especially when there is nothing you can do. And when the health problem is a rare disease... Well, it makes things harder.
It's a combination of becoming invisible and being seen for all the wrong reasons. Invisible, because my problems aren't easy, and let's just all ignore them. Too visible, because all some people see is the things wrong with me, and the real me is lost.
And it's worse at church. There's an underlying theme of if you pray the right way, you'll be healed. Add you should have peace and joy in all circumstances. And you need to correct sin in your life so that you find healing.
Thank goodness I've never posted a Facebook rant, but you know what? I get it. Some days it's just too much.
See? Here. This is clear. I understand the root issue and how you it affects your daily interactions. I'm sorry you are facing these challenges.
See? Here. This is clear. I understand the root issue and how you it affects your daily interactions. I'm sorry you are facing these challenges.
Thanks. I'm learning how to deal with discussing it, and how to approach it so that people understand. I'm rather socially awkward, so that doesn't help, but I'm making progress. I've learned what people are really my friends, and unfortunately, I've found that a lot of people I thought were my friends really aren't. But I'm making new friends who accept me as I am, and I'm learning to deal. It is what it is. I can't control my body. I can only control my thoughts and my actions.
All of this is rather new. I've had problems most of my life, but I didn't get a diagnosis or even acknowledgement that there are major problems until this summer. So I'm about five months out from confirmation, and a year and a half out from the first mention of EDS.
I really think that as I learn to accept my health problems and compensate for them, it will be easier for me to interact with other people in a way that works for all of us. It just takes time. But I'll get there.