“OMG, why do you talk about your medical problems so often?”
I’ve had this conversation, as well as overheard this conversation, recently…
“No, seriously. It’s like you’re always talking about it. Your rings, your surgery, your doctors, your diagnosis, your pain. On and on and on and on to everyone!” “She doesn’t do anything but tell people all about her medical issues like she’s special or something”
Honestly? I do talk about it a lot. I swear, I’m not greeting people with “Hi, nice to meet you I’m a zebra want to hear about it?” But when someone asks about my rings or why I’m in an air cast, I end up in discussions. They go one of two ways. People say “Oh, I’m sorry” and change the subject, or they start asking a bunch of questions. If it’s the later, I try to answer most questions.
Why talk about such personal medical matters?
A lot of people, including many of my family members, feel that medical information is very personal and should be hidden away like Harry Potter…let it out just enough to survive and then stuff them back it the closet under the stairs. There is some wisdom in being discrete. Potential employers can search you and have the risk of being turned down for having chronic illness issues. And not all of your friends have the stomach to hear illustrative descriptions of how you’re bleeding from your uterus an abnormal amount or the noises of putting a subluxed joint back into place.
I, however, think it’s all kind of fascinating. Though I can’t say I enjoy having to deal with it, I still enjoy learning about just what’s going on. I also love sharing things I’ve learned. So for me, it’s all about sharing new information with people that are interested.
Sounds like you’re just liking the attention of being rare
I can see how it can look like that from the outside. There are certainly moments when it’s really personally gratifying. However, those moments are probably different from what you might expect. One might think, I live for the moments that are full of emotion and sympathy, and being told how brave I am. Though I had a recent post that expressed appreciation at such a statement, those generally are more uncomfortable than encouraging. That’s another topic entirely though that I may go into at a later date.
So what about sharing DOES makes it personally gratifying? When I end up talking to someone that has similar issues and understands. Those rare moments where I meet someone that comments on my ring splints, and then asks if they’re medical because they have EDS and were looking into them. The few moments where you don’t quite feel like the only zebra in a herd of horses. It’s that connection to someone walking a similar road.
That can’t be the main reason though…right?
Well of course not! The main reason, as I’ve stated above, is that I love sharing things I’ve learned. Most people have not heard of anything on the hypermobile spectrum disorder list. They’ve also not heard about the really cool advancements of polyester ligaments and silver ring splints. These are all the kind of things that I wish with all my heart someone would have told me, or explained to a family member, years ago!
In just the short time I’ve had my ring splints (about 2 months at this point) I’ve been able to give a few lovely people hope of returning to things they’ve loved but had to put aside because of failing fingers. If you’ve never had that type of despair, it’s hard to explain what it means to have that particular type of hope.
And less on the zebra side of it, I feel we need to step out of the idea that mental illness such as depression and anxiety are embarrassing to have or a personal failing. That can’t happen unless we take it out of the shoebox we’ve stuffed it in. It’s never going to get the attention it needs to be helped if we keep stuffing it away like that and shoving it in the dustiest part of the closet like pictures of the ex you wish you forgot. And I think discussion is a good step in that direction because it at least makes us acknowledge that shoe box and reminds us that we’re not the only one with those hidden things in our minds.
But why all the time?
If I’m completely honest? Because that’s what occupies most of my life right now. I’ve been dealing with loose and painful joints since I was a tiny, little girl. Only in the past few years have I been to doctors that were able to help with various issues…but that means changing the whole way I view the world. You’ve got to accept that you have a serious condition as well as find a whole new way to approach every day life because of it. Recent surgery has put me at the mercy of others as I was unable to be self-reliant in the most basic of tasks while I recovered. I’ve got ring splints that I need to wear every day if I want to be productive. It makes you hyper-aware of your own issues to the point where things that aren’t absolutely necessary your brain just shuts out.
So while I may talk about things like my recent accomplishment of learning how to make pine needle baskets, or an amazing dinner I had with friends. I’ve no choice but to admit that the most pressing thoughts are all surrounding my mental and physical health right now because I’ve got so much going on that deals with it. From waking to sleeping, there’s little that I do in between that doesn’t have to have it in the forefront. Showering, nourishment, walking, even sex becomes complicated! So it should come as no surprise how much it’s in my conversation as well.
Which all goes back to knowing there’s other out there that are feeling similar struggles. And if by sharing any bit of my story…I can help them to feel less alone, a little bit braver, more vocal when they need it, understand a loved one who’s going through it, be reminded to offer a kind hand to another struggling…then it’s totally worth it.
