Things I wish my family would understand about my chronic illness
I am in preteen "I'm so misunderstood!" mode
- •I'm not walking slowly to be annoying.I know you want to walk farther. I can't go farther. I'm deconditioned because of pain and fatigue. I'm also malnourished and exhausted. I understand why you're irritated, but I can't do anything about it.
- •Maybe I didn't used to be this way, but I am now.I was an inflexible child because my muscles were working overtime to keep my joints in place. EDS, if I do have it (and it's very likely I do) is degenerative - most people start having trouble as young adults.
- •I'm struggling to come to terms with this too.I used to do a lot of things. Many of these I can't do anymore. It's odd being disabled in this way - there's so much I think of myself as being that I am not.
- •If I cry after doctors' appointments, i'm genuinely upset.I don't like being told that nothing is wrong. I know that something is wrong, and I want someone to acknowledge that and tell me how to deal with it.
- •I am always "pushing through it"I wouldn't walk, wouldn't eat if I wasn't.
- •I'm grieving what this took away from me.The average life with consistent schooling, dancing... I'm trying my hardest but it is not enough.