As a young child growing up, I was super active. I’ve dealt with asthma and allergies since before I could remember so it was never a big deal, nor did it ever hold me back. But sometime during my early teenage years, things changed. In middle school I ran cross country, in high school I was on the swim team, and in college I did tae kwon do – all of which I remember being such a struggle.
When my mom picked me up from school, she’d ask how I was and the answer was always “tired.” When she got on to me because my grades weren’t as good as they used to be, I tried telling her that I felt like I had been smarter when I was younger, that I used to be able to think more clearly, but that something had changed. Back then, we had no idea I suffered from chronic fatigue and brain fog and since it wasn’t yet bad enough to derail my life we just ignored it. That was also around the time I started choking on my food. I did my best to hide it, because other people were usually more freaked out about it than I was, and found little tricks to get it to pass. It wasn’t until after my first impaction (when food gets so firmly lodged in your oesophagus that it has to be endoscopically removed), in 2013, that I was diagnosed with Eosinophilic Esophagitis (EoE).
January 2015, for the third time since 2010, I went to my doctor complaining of fatigue, brain fog, and intolerance to cold. The usual bloodwork was done and when, yet again, everything came back normal, I finally pushed back. “I’m always tired, I feel like I can’t think, and I can’t stand the cold – at just 15°C my toes go numb and by 5°C I can’t take it anymore. Clearly, something is wrong! So what is it?” I’d been so consumed by fatigue and brain fog that, in the past, I’d just let it go and gone home. But now I wanted answers.
We ran a few more tests (thyroid sonogram, EKG to check my heart), but when nothing came up and I still insisted on figuring out what was wrong, I was kicked out of the office! I then found a much nicer doctor who referred me to several specialists – I got a take-home polygraph machine from the sleep lab to rule out apnea, had an MRI to check for brain lesions, and an EEG in case it was nerve damage. But the results were always the same: everything was fine. By July, when I went to see my neurologist about the pain I’d been experiencing, the fatigue had gotten so bad I could barely manage the 5 minute walk to her practice. Luckily, she wrote me off sick, but what I didn’t realize at the time was that she had written “depression” as the reason. I tried for months to get her to correct the diagnosis, but she refused. By this point, I stayed in bed all day unless absolutely necessary and, even then, it was such a struggle to get up. I remember one day sitting on the edge of the bed for 30 minutes until I could bring myself to stand.
Sadly, my story is nothing unique. With friends and family often thinking it’s all in my head and that I just need to toughen up or stop being so lazy and so many doctors who know nothing about these kinds of rare diseases, I often turn to internet forums for advice and support. There I find thousands of others going through the same ordeal, often much worse than I am. I regularly come across numerous posts in various support groups from others whose stories echo mine. Unfortunately, there are many others out there who have yet to be diagnosed and are still wondering what’s wrong.
I’ve learned through this journey that you can’t passively expect your primary care provider to do everything for you. You can also bring the information you find to them and inspire them to do their own research, but if they don’t take you seriously or seem to care, then don’t hesitate to find another. Know that, as hard as it is to endure family and friends who don’t just passively not understand, but will also actively give you a hard time… YOU ARE NOT ALONE!