You Don't Look Sick
Last updated: December 2016
I think that every person with migraines has been told the phrase "you don't look sick" at one time or another. Whether it's a friends young child, or someone who doesn't know any better, it hurts either way. I was 15 when I was diagnosed with a chronic migraine disorder, and since then I hate to say, it has only gotten worse for me. I'm sure that this is a similar story for a lot of you, and I really hope that you can take comfort in the fact that you aren't alone, and maybe learn something from my experiences.
I saw my first neurologist during my freshman year of high school. By the time I finished first semester of my junior year, I was switching to online school because I had missed right around 50 days of school that semester alone. Though I was lucky, and had teachers and administration who are amazingly supportive, and a district with a accepting policy on chronic illness, I just couldn't keep up with the work anymore.
At this point I had tried pretty much everything in the book. I was on my second neurologist, had seen an allergist, a psychologist, a psychiatrist, a natural-path, two chiropractors, a massage therapist, and had been in either urgent care or the emergency room more times than I can count. I was diagnosed with a severe anxiety disorder, and mild depression. Thankfully, I was able to combat the depression individually without much medication. Turns out that the medication I needed for depression was quite a few hours horseback riding, and a puppy (who was my 17th birthday present). With one health concern out of the way, we began to focus on the anxiety disorder and subsequent insomnia. The psychiatrist I was seeing was not used to dealing with severe migraine disorders, and didn't realize that my abortive medications (Migranal, and Rizatriptan) both add serotonin to my body and that I took these medications quite often. She prescribed me a very high dose of Zoloft which also adds serotonin to the body, and I ended up with too much in my body. I was also put on anxiety medication that was supposed to be short acting, for around eight months. Finally, we stopped the anxiety medication because we were fearful of the harmful effects on my body. With the end of treatment, the anxiety started back up. I have panic attacks. I have a hard time sleeping at night, so I get a migraine. Then I can't sleep, and I have a migraine, so I have to take medication. The anxiety will trigger my migraines, but my migraines were the main reason that my anxiety flared up. I live in constant fear of my next attack, and normally it's right around the corner. I can't go more than a day or two without a severe attack, that disables me for at least a day and normally two to four. No preventative medications we have tried have worked, and I have had five rounds of Botox, an SPG nerve block, and an occipital nerve block, and no relief. I have tried herbal supplements, vitamins, and some unconventional therapies. I have had a brain MRI, and spinal column X-rays. I have tried "that new thing that worked for my second cousins best friend". I have began to keep my own health records in a binder because I see so many doctors. I am labeled as drug seeking, because low dose, and weak pain killers do nothing for me and I am 18.
As with most people with migraines, those close to me in my life are effected too. As a young person, who lives at home with the condition, my parents are a factor in my health. They try to understand, but at some point you just have to have gone through it to get it. They care about me, and advocate for me with the many doctors I have seen, drive me to get emergency treatment, and sit with me in waiting rooms. They try. They try hard. My illness doesn't just hurt me.
For me, there is no end in sight. No end to the suffering, and no end to the pain. I take things one day, and one migraine at a time. The immediate choice of whether to take medication for this headache and if so what to take, and which ice pack I am going to use today are my daily choices. I stopped looking too far into the future, because for the time being I have to fix my health to be successful in my future. I can't spend every day in bed forever, but for right now I am in too much pain to do anything else. On the one day I week that I manage to pull myself out of bed, get dressed, and leave the house I "don't look sick". I only wish that people knew the hours it took me to convince myself I was strong enough to shoulder the pain that day. Please know you aren't alone. You aren't crazy. Your pain is valid. Your methods of treatment are valid. Eventually, someone will find a cure for this monster of a disease that plagues our lives. Until then, we just have to be strong, and keep fighting.
In the past year, has insurance made it difficult to get your migraine treatment?