I apologize for all the trees I just killed

So this came in the mail today…

I requested my medical records from Vandy a month ago and had wondered where they were. I knew there would be a lot but didn’t know there would be nearly 15 pounds worth. This isn’t even all of my medical records at this one hospital. It isn’t even my records from a full ten years.

I’m contemplating looking at them page by page but I have to admit I have mixed feelings. On the plus side I’d be able to see how far I’ve come in the past decade-ish. But in many ways that is the downside too. I’d have to revisit some of my worst times, look at my hospital records and find out exactly what my doctors though of me, and possibly see that I have not come quite as far as I think I have. So much of my life is encapsulated in these records and as much as I like to say that I am not my health or conditions, I don’t always feel that way. It is hard to face 1000 pages of medical records, so much of which made me feel inferior and small, saying over and over that the tests came back negative or inconclusive and doctors questioning my credibility and motives.

I was going to write a separate post about this today before my records arrived but I spent Tuesday and Wednesday in Miami looking at MPH programs that I might attend in the fall. At the last school I visited I took a campus tour that I had requested a wheelchair for. It is hard for me to stand for more than 30-45 minutes at a time because of my POTS and the pain that comes from my fibromyalgia. At least for me, there is nothing that speaks more loudly than the silent side-eye I get from people who watch me, a healthy looking 20-something girl, walk into a wheelchair. I know that I am sensitive about it in the first place and maybe I do imagine some of the reaction I see, but it is one of the hardest part of having an invisible illness (or in my case five). I wish that I could easily explain to people how painful such normal activities are. I wish I could explain that I am not just lazy or attention seeking or that I can’t just grin and bear it as my father would say. Even last year I would have just walked the whole tour until I was nearly in tears from the pain and having flash bulbs in my eyes because I’m dizzy and about to pass out. I realized after having to leave a friend’s birthday party at the zoo because the walking was too much that it was not an act of defeat to use a wheelchair. I don’t use it often but just giving myself the option again has taken so much weight off my shoulders. Even yesterday, I think 10 times out of 10 I would use the wheelchair again even with the side-eyes.

Do any of you struggle with invisible illness or disorders that impact your everyday life? I’d love to hear from you.

As Forest Gump would say, “And that’s all I have to say about that.” xxoo