Monday, November 5, 2012

Day 5 of #NHBPM: Health Activist Soapbox

I'm a little late getting today's post up. Before I get started, I'll just share a little bit about why I'm running late. Today is one of those days. One of those really bad days. This weekend was jammed pack and I'm paying for it now. I think I need to go back and reread my posts about pacing. Today I have my first Physical Therapy appointment and those are always painful for me. All of the poking and prodding is just down right painful. Because I have the appointment today, I haven't taken any pain medication. I think my body is slowly (sadly) becoming accustom to the pain meds that I would probably be okay driving, but I don't think I'll ever want to take that chance.

Okay, so on to today's topic. Health Activist Soapbox. Hmmm....I'll be honest, I'm not too sure where to go with this one. I suppose I'll just start writing and see where things go. I think the most important thing that we need to do as chronically ill patients, is to advocate for ourselves. I could tell a lot of stories about how horribly I was treated by the medical profession while searching for a diagnosis. When I first got sick, I naively thought I'd go to the doctor, get diagnosed and get treated all pretty quickly and easily. Well, that is so not what happened. I went from doctor to doctor to find a name for my illness. Since EDS wasn't on anyone's radar, I was told many things. Things like: "We may never figure out what's wrong with you," "You have anxiety," "Why do you have to have a diagnosis?"....those are just a few of the gems. Well, doc never finding out what's wrong with me is not acceptable. Of course I have anxiety! Wouldn't you if you were sick and you didn't know why? And, I want a diagnosis because I want treatment. I want to feel better! Almost everyone gave up on me. I had one very sweet doctor who tried so hard, but even she couldn't figure it out. Ironically, I figured it out myself. Yes, I went to the horrible, horrible (where's the sarcasm font?) Internet and started researching things myself. To be fair, I had had a few doctors tell me I was hypermobile, but no one ever saw the EDS. I figured it out, found the best doctor to go to and made an appointment. I went in armed with records, symptom lists and pictures of my daughters. Yes, I figured if he could see the EDS in them (which I was sure they had), it would be easier for him to see it in me. Well, I was right. And, taking those pictures in wasn't such a bad idea. I didn't have a family history of EDS, but my daughters proved that it was in our family. Between those pictures, my exam and my history I had enough proof to be given a firm diagnosis of EDS. While I'll be forever thankful for my hero, I'd be lying if I didn't admit how disappointed I was with the medical community. With the exception of two doctors out of dozens, they all gave up on me. That is wrong. It is their job to figure things out, not mine. They went to medical school, I didn't. When things got tough, they got going. It was a horrible, horrible experience. If you are still searching for a diagnosis, don't give up! We know our own bodies better than anyone.

Besides advocating for ourselves, I think we need to be advocates for our own illness. Everyone can do some sort of advocacy. You are advocating for your illness when you share it with others, even just with family and friends. When you share it with work colleagues, neighbors, and acquaintances, you are also advocating for your illness. It that's all you are able to do, that's okay. Another type of advocacy is through blogging or Internet message boards. Sharing our chronic illness experience gets the word out there. People talk. That  will help lead to more awareness in general. Tell all of your doctors about your illness. Who knows, it may just lead to a diagnosis for someone else. Some people may be able to do more. Perhaps they can do volunteer work for a national group associated with their illness. All of these types of advocacy can lead to more understanding about not just your illness, but chronic illness in general. More people talking can lead to more research dollars being raised. Research dollars can lead to treatments and perhaps even a cure. One amazing story of advocacy is that of the Crowley family. The Crowley children have a neuromuscular disorder known as Pompe's disease. It is often fatal. John Crowley was determined to help find some sort of treatment for his children. The Crowley's story was told in the movie Extraordinary Measures. Here's a link for more information about them:

I guess I had something in me after all. See you tomorrow!


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