Thursday, November 1, 2012

National Health Blog Post Month 11/1/2012 entry


I decided to participate in the annual National Health Blog Post Month this month. Every day this month I will be blogging. Yes, EVERY DAY! If you have a Blog devoted to your health, you can participate too. Here's how: http://info.wegohealth.com/nhbpm2012/

Here's how this works. Every day I'm given a prompt (thank goodness, because I might run out of ideas!); today's prompt is: "Why I write about my health."

I write about my health for a variety of reasons. One, to keep my family and friends up-to-date on my condition. It's so much easier to write a blog and share it with a lot of people than to write and respond to many different people. I'm sure that's true for any kind of blogger, but for those of us with chronic illnesses it's even more true. We only have so much energy to devote to everyday life. And, we may not feel up to it on many days. As an aside, I have to admit that many family members and friends do not yet know about my blog. I suppose I'm more ready to share my illness with strangers and a few close personal friends than family and acquaintances. Maybe I'm afraid they will think differently of me? Maybe I'm afraid they will exclude me from things based on what they read in my blog? Maybe they will think I'm a whiner? I'm not really sure.

Another reason I write about my health is to bring awareness to my illness. So many people have never heard of Ehlers Danlos Syndrome. If they've heard of it, they may associate it with one particular manifestation of the disorder (think the man with the very stretchy neck http://drugline.org/img/term/ehlers-danlos-syndrome-4916_2.jpg  ). Yikes! Or, if they do happen to know someone with the disease they may think that everyone who has EDS has the same, or nearly the same, symptoms and/or disabilities. I am 100% sure that there are hundreds, maybe thousands of people in the country who are walking around with EDS and they do not even know it. Maybe they've seen doctors who've told them there is nothing wrong, or that they are "just flexible" and should be happy about it. Or, maybe they have EDS and don't have any symptoms, or they have very subtle symptoms for the moment. If we can bring awareness to EDS, then we can get more people diagnosed earlier in the course of the disorder. Perhaps, in those individuals we can stave off some of the complications that can arise in untreated EDS. Also, there are many other illnesses that tend to go along with EDS, illnesses like Dysautonomia, Irritable Bowel Syndrome and other gastrointestinal illnesses, cardiac problems and osteoarthritis to name a few. When a person is diagnosed with EDS, especially when it's by a geneticist familiar with EDS, the doctor will be on the look out for these other conditions. Especially if they are informed themselves.

Something else. When I was diagnosed with EDS, in fact, before I was diagnosed with EDS, I found comfort and reassurance in reading other blogs. Somehow, I felt a little less alone in dealing with things. I learned  about my particular illnesses and about dealing with chronic illness in general. These are things I hope to pass along to the readers of my blog.

And, finally, I write about my health because it is cathartic to "get it all down on paper." Sometimes, writing about my illness helps give me clarity about a certain situation. I also use it as a dairy of sorts. I can look back over past entries to see changes or progression in my illness.

I may not be the best writer, (in content, grammar and punctuation) but I do enjoy it and I hope that someone out there reads something here that helps them in some way.

One down 29 more to go. Stay tuned.

Shari


1 comment:

  1. Stopping by from #NHBPM. Thank you for sharing. Great post!

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