I’m Not a Hypochondriac

By Keelin Nielsen Donohoe

For a lot of people with fibromyalgia it can take years to find the real diagnosis. For me it took 6 years to even hear the word fibromyalgia, and a year and a half more to finally have it written in my notes as my official diagnosis. In most cases, people would consider receiving a diagnosis a bad thing. For me however, it was a triumphant day.

With a lot of people with fibromyalgia, health issues can come like an avalanche, one after the other, and with them, one diagnosis after the other. I was first diagnosed with chronic migraine, then celiac disease, next was depression, and then a problem with one of my eyes… you can see where I’m going with this. Then I began getting really sick, and they did a million and one tests and couldn’t see anything wrong. They called it stress and slowly doctors started looking at me as the girl who cried wolf. I frequently had to take weeks off school and when I was asked why by friends or classmates, I had to tell them I had gotten the flu again. Then I moved on to admitting to people that I just had no clue what was wrong with me. Eventually I got tired of the disbelieving looks I was getting (from my classmates, not my friends, they were amazing) and started joking it off or changing the subject. I was tired of being the sick girl.

Fibromyalgia is a diagnosis of exclusion. Which means they have to rule out all other possible causes of symptoms before giving you that diagnosis. For a condition that ranges from pain in your legs, to noise and light sensitivity, to weakness and stiffness, you can see how this might be difficult. I spent a year and a half seeing a doctor who specialises in fibro and being given medication for fibro, before the doctor was finally satisfied that every other possibility had been excluded and officially diagnosed me.

If I was already being treated for fibro by a doctor who specialised in it, why did I need that diagnosis so badly? Because, every time I had an appointment with my GP I would have to explain that I was being treated for fibromyalgia and that was likely what I had. I was lucky I only met doctors that believed in fibro. There are many doctors in the world who still, to this day, do not believe it is a real condition despite all the research- go figure. Also if there ever came a day where the government got with the program and fibro made the disability allowance list, or I moved to a country that had it, that would be very important.

But the real reason I needed it was honestly for my own validation. Years of doctors almost rolling their eyes when I walked into their office, or knowing some people thought I was just being dramatic, had really taken its toll. There were times I wondered if maybe how I was feeling wasn’t even real. I had somehow even been convinced that it was all in my head, even when I knew I was sick. That feeling is still here sometimes, almost 2 years after my diagnosis. I’ve had a sinus infection for a while now and today I finally got an appointment to see a specialist doctor. Even though I knew for sure it was a sinus infection, I was still nervous that he would tell me there was nothing wrong!

There is power in a diagnosis- the power to connect with others like you and the power to heal yourself. I found support groups on facebook that showed me that symptoms I’d had for years were actually part of my fibromyalgia. I found blogs where I read about people who had gotten better, people who had gotten their lives back. I found hope. And I also found natural medicine and a naturopath who went back to the drawing board again and again to get me my health back, and a college through which I understood my illness, and learned how to help myself, and others.

More is learned about fibromyalgia every single day. There are fantastic doctors out there who will take you seriously and finally put the pieces together to give you that diagnosis. I know of so many natural health practitioners out there who will work really hard to help you get your health back, treating your symptoms even if they do not know what the condition is. Things are changing. I was diagnosed in half the time it has taken for people a generation ahead of me which shows there is more awareness. I had the most wonderful family and friends around me who did believe me and just prayed for me to finally get the answer I needed and get better.

Anyway, that is my story. I pray you find support and treatment, and a diagnosis too if you haven’t got one yet. But I especially hope that we all find that belief and confidence in ourselves, our gut instincts and what we know about our own body.