Most families are dysfunctional and mine even more so. There is a lot of undiagnosed and untreated mental illness floating around I think and that's not so fun.
Understandably, growing up with a chronic illness tends to warp minds a bit. I recently read a book about fibromyalgia and found this quote that, I think, describes very accurately children dealing with chronic illness of any kinds:
Claudia Marek, author of The First Year - Fibromyalgia, interviewed a group of children and was amazed to discover 50 percent of her interviewees thought everyone they knew had pain but that other children were simply braver and better at coping with it than they were. Consequently, they were unwilling to verbalize their distress to others. In fact, for many children with FM, the pain they experience is "normal" to them. Since they have not experienced life without the disorder, they cannot distinguish their symptoms as unusual. (14)See what I mean? I always talk about how thankful I am to have been ill from such a young age, but it's not like it's a picnic either. I very much thought that pain was normal and that everyone else just did better with it - even when I knew that wasn't the case, that is how it always felt to me. And it has always been tremendously difficult to explain what is going on with my body, even when I know the technical terms. Hooray for not being crazy!
Even so, there are enormous feelings of inadequacy, of horrible loneliness, of impending doom at the things I know could be just around the corner for me. I have a lot of frustrations and questions - Why do I have this? Why won't it go away? How much worse will it get? How much longer do I have before it gets to the point where I can't do anything anymore? When will I have to apply for SSI? Who will stick around to watch me get worse? The list goes on and on.
Basically, the soundtrack to Rent is constantly playing in my head.
Understandably, a lot of people dealing with chronic illness deal with depression. Much of it is due to fearing the future and missing the past you, the person who was 'whole' and could do things. Children with Still's have a higher incidence of depression than children with other arthritis types because it is so hard on the body and the mind.
Thinking about it, I probably have been dealing with depression since about 6 or 7. I didn't know how to put it into words, but between Still's and sexual abuse I had a lot going on. From how everyone treated me being so sick, I figured I would die pretty much being a young kid and that was always tough. Even now, I sit here at 24 years old looking at my engagement ring with a mixture of joy and sorrow - part of me still feels that somehow, for some reason, I won't make it to that day.
The first time I thought about committing suicide I was probably 8. And it constantly popped up throughout the rest of my life to today... not today literally but figuratively. And a lot of people don't get why for some reason.
In the June or July of this year, I had my first appointment ever with a therapist. He listens mostly, but is trying to help me sort out all of my anger and my frustrations. Obviously as you can see, there is a lot going on.
It is incredibly important to make a mental health professional a part of your medical team. Even if you don't see that person very often, having someone to talk to that isn't a part of a situation - and that you know isn't going to gossip about it to the rest of your family or friends or tell the person your frustrations deal with about it - well, that's pretty priceless in my book.