I’ve just realized I have a chronic disease and it’s not my fault.
I’m 36 years old, and I’ve had migraine and tension headaches since I was about 11. I’ve been in pain to some degree for 25 years.
For all those years, I’ve been trying to find the solution, the treatment, the right way to be, to have less or no more pain. If I eat better or exercise more; have less pain medication, or more, or different pain medication; if I sleep better or watch less TV or some such thing, I’ll get better and be a “normal” person and do things everyone else does.
At the moment, I’m at home recovering from burnout. I’m a high school English teacher to kids with attention-deficit/hyperactivity disorder (ADD/ADHD), autism spectrum disorder (ASD) and so on. I have ADD, so I can relate to the kids I teach. This also means everything a teacher needs to do is challenging for me, and after eight years I was totally overwhelmed and burned out. Calling in sick a few times every month due to migraine attacks didn’t help.
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A couple of weeks ago, my coach asked me how I was doing and how my headaches were.
I couldn’t give her an answer; it was too complicated.
My migraines are worse lately but I have less stress, so fine I guess? The weather changes and my menstruation cycle are making things worse but I slept well, so fine I guess? I ate too much sugar on my son’s birthday, but my house is much cooler than outside so my brain isn’t frying, so fine I guess? My kids woke up with pepper in their pants (a Dutch expression) and haven’t been calm all morning but I can move my head without puking, so fine I guess?
This inability to answer a simple question got me thinking about my pain and I began researching migraines. You’d have thought I know everything there is to know about my pain, but it’s been my normal and I just had to deal, so I did and I do without too much thought. Besides, life gets in the way; I’m a wife, mother, daughter, friend, neighbor, etc. Anyway, I came upon all these people who have what I have — runny noses, watery eyes. All these people who also always carry sunglasses everywhere, even on rainy days. All these people who feel misunderstood and inadequate, like I do, and I realized I have a chronic disease and it’s not my fault.
I’ve been to a neurologist years and years ago. He said I had mental issues I needed to resolve. My GP said go to physical therapy and take these painkillers. So, I always thought I had to do something better or differently and I would get better.
I’m so, so relieved to find out I have a chronic disease. This pain in my head is actually a disease. All the symptoms that seem unrelated are all part of that disease — brain fog and fatigue; constipation one day and diarrhea the next; needing to move through the pain one minute and needing to lie down the next; needing to puke to relieve the tension in my head; being angry for no reason. And the best thing is, there is nothing I can do about it. It’s not my fault. I can look for other ways to manage the pain, I can know my triggers and keep them to a minimum, but I can’t change the way my brain works. It’s not my fault.
I can’t properly explain what a profound relief it is to know what it is I have — to realize after all these years it wasn’t something I did or didn’t do. It’s not my fault.
I have ADD so I know what it’s like to have a differently wired brain. I accepted that the minute I was told: “this is what you have.” But pain is so intangible and pain in your head even more so, in my experience. I’m not saying other pain is less; just that, in my experience, my mother-in-law who has chronic pain due to a car accident is taken more seriously than I am with my migraine attacks. Especially if you’ve had it for so long you can do things in pain others wouldn’t dream of.
I cry thinking of all those years I’ve thought it was my fault because I wasn’t trying hard enough. And I cry because it’s not.