It’s hard when you get deemed “the medical mystery”

To be honest I don’t think I have been physically healthy in a long time. Part of it is because I don’t think I’ve ever really gotten the bottom of what is actually wrong. Since I was 17 I’ve had health challenges and for a few years there I had it under pretty good control. I had a diagnosis of PCOS did what I could with that and moved on. I try to do what I can keep active and eat healthy, and for the most part it’s done its job. Till 2016.

There has always been something that’s lurking in the background. When I was 17 my doctor established that I was iron deficient, I do not have a diagnosis of anemia though. This has been something that has been frequent point of discussion from specialist to specialist “Why are you on iron?”, “Because my iron is low” I reply, “Do you have anemia?” they ask, “No.” Or they themselves check and then  tell me that I don’t have anemia based on my capillary refill, “Did your doctor check to see what’s causing this?”, “no”. More than once I’ve talked to my GP about these conversations but he doesn’t seem to take it seriously.

Actually, the last time I saw him he simply shrugged and said “You’re just a medical mystery” and I honestly almost piped up and  said “Didn’t you go to medical school to solve those medical mysteries?”

The thing is I’ve  had my GP since before I was born. But ever since I was a kid he doesn’t take things I say all that seriously, it’s like I am an 8 year old kid playing sick to get out of school. And it’s frustrating because I’ve always doubted myself because that attitude he displays, even when I have been really sick. Now as a young adult things are the worst they’ve ever been and I know there is something really wrong with me. I went to the hospital because I got so frustrated with being bounced around and no one taking me seriously.

It was as if to say this is really serious, I’ve gone through 4 years of a health care program I know what is normal and  I am certified! Please take me seriously! Going to the hospital actually really helped I finally got a specialist and  finally got an appointment, I was so happy because after 7 months of bleeding, pain, and dizziness that I was finally going to get seen. And then my specialist got the flu…

So here I am  waiting again and hoping I get seen soon, or at least know what is happening with my body. I feel like this has been holding me back and the uncertainty of what happening is frustrating and stressful.

On top of that, I feel like no one really takes it seriously but me. I wish people in my life were more concerned or that I’d even get a “How are you feeling” because at this point I am holding it all in, and disheartened that no one seems to really care about this but me. It’s also frustrating because if it was anyone else I know that I would do my best to help them feel better and be there for them but I don’t really feel like anyone else has the time or emotional availability for me to express my fears. I feel like some people are just in denial about what is happening and when I tell them my fears they shoot it down because they aren’t able to deal with it (that’s the emotional availability bit) so I’ve not talked about how I am  feeling anymore.

At this point, there really isn’t anything I can do. I have the best specialist for this problem and I am on the list. I am just really hoping that this gets figured out soon though: having a diagnosis any diagnosis is better than dealing with the frustration of being “the medical mystery” and being written  off.


2 thoughts on “It’s hard when you get deemed “the medical mystery”

  1. I too am a medical mystery! It’s ridiculously frustrating to say the least. I hold onto the hope of receiving ANY diagnosis soon.
    My blog name is about finding positives in life despite not knowing what the hell os going on.
    Hopefully 2017 holds answers for us both! 💖


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