At 7 I had my first migraine with all the classic symptoms: nausea, light sensitivity, and vomiting. From then on I started having them every month or two.
At 10 I was having much more frequent headaches and migraines. I never thought to mention the pain to anyone because it crept up on me so slowly. By this time the issues with nausea and vomiting had mostly ceased, so it wasn’t until I started asking for Tylenol all the time that my family had any reason to suspect there was something wrong. I was then misdiagnosed with sinus congestion and allergies and prescribed an antihistamine to combat what doctors mistakenly understood to be an acute headache. Of course, the antihistamine helped very little, and my chronic migraines continued, undiagnosed.
At 21 I learned for the first time that having head pain and light sensitivity on at least 10 days out of every month was unusual. That revelation happened one day when I was complaining to my roommate that I’d been having a migraine for 4 days straight. She replied that she’d never had a headache or a migraine. The discovery stunned me. Never? How is that even possible?
That same year my boyfriend and I had a similar conversation, and he told me he only had a headache when he was really sick or really exhausted. I was baffled. So you mean this isn’t normal? I started asking other friends and it was confirmed: normal people don’t have headaches more than a couple times a month.
At 22 I finally sought treatment. Out of the blue I had started having horribly painful headaches on 20 days out of each month rather than 10, and my untreated disorder had finally brought me to a breaking point. I became paranoid and anxious while I desperately looked for some explanation for what was going on. Did I have a sinus infection? Was I sick from the mouse droppings in my aging college house? Was it the moldy basement in it where I slept? Or was I suffering from the stress of my impending graduation and my search for a job? I couldn’t figure it out, and neither could several different doctors.
It was a few months of searching for answers and help before I was finally diagnosed with migraines. Then it took several more months to find anything that helped improve my pain. It was a rough time.
Now that I finally have the proper diagnosis and treatment, I keep wondering how I managed to go for so many years with a chronic pain condition without anyone, including myself, realizing I was different. And why did it take so many doctors to get a simple migraine diagnosis?
One reason was the gradual onset of the pain during my childhood. It happened so slowly that I didn’t realize I was feeling a little worse each week, and by the time my condition became a fixture in my life I couldn’t remember what it was like before I was in pain so often. I suspect this happens in a lot of chronic pain patients.
Another was the challenge of communicating my pain to others. Now that I’m an adult I’m a lot better at this (see my post, How to Create a Personalized Pain Scale for Your Chronic Condition) but when I was a kid I simply didn’t have the language to express my symptoms, and I didn’t even know what that word chronic meant.
I think the biggest reason of all was the same reason a lot of kids take years to discover they’re cope blind: My chronic pain was my own unique way of experiencing the world from a very young age onward. I didn’t have any way to know that what I was experiencing was different from what anyone else was experiencing, and it never occurred to me to ask.
I don’t necessarily regret going undiagnosed for so long because I managed to make a pretty great life for myself without medical intervention. But I know now that my quality of life is much better with a migraine treatment plan, and I hope that other people are able to get their diagnosis much quicker than I was.
Did anyone else out there develop a chronic pain condition as a child? How did you get a diagnosis, and how long did it take? I’d love to hear your story!