The problem with this blog is it’s too…niche. I write about chronic pain, and hospitals, and doctors, and needles. But I also write about marriage, and phone calls, and walruses. What genre is this? Fantastical memoir? A mostly useless advice column? Medical nonfiction comedy? No genre will ever fit, not without an asterisk. So I think this blog will eventually fade into the dusty corners of the internet because it’s hard to describe, and also because it has no click-bait stock photos.
I have the same problem with describing my headaches. There have been so many questions from loving friends and family, who want to know what I’m experiencing because they care. And I’ve received similar questions from triage nurses at the E.R., naggles in hospitals, and specialists in their offices: “What is the problem?” Every time, I’ve wanted a concise answer to give. And every time, I feel like there isn’t one. Because each week, sometimes each day, or even each hour, of the past year has come with its own unique adventures. I’ve spent some hours curled up in a ball, unable to feel my limbs and collapsing under the pounding of an invisible hammer. There have been days and days of dizziness and nausea, and weeks worth of stabbing headaches above my left eye. I’ve spent a total of 25 days in a hospital and another 25 million days waiting in waiting rooms. For an hour here or there, I couldn’t move my hands or feel my tongue. (Who knew that was a thing?) Vertigo was an on-again-off-again friend for about three months. I’ve lost count of the number of sleepless nights. And through it all, I wished I couldn’t feel my head, as I’ve spent nine months with a 24/7 headache (which I named Draco).
I have a niche sort of headache problem, don’t you think? This is why I, like so many others with chronic illness, had a lot of trouble getting a diagnosis at all. My first doctor thought I had a rare infection, then I switched to another doctor who diagnosed me with panic attacks. Two months went by before a friend from church guessed I was actually having migraines (thanks, Thao!), then a month more before finding yet another doctor, who agreed, and astutely observed that I was having bad migraines that didn’t really…end.
So I received a diagnosis that fit, sort of: intractable migraines. This means, essentially, bad and long-lasting migraines. But some intractable migraines are over in three days, not continuing for more than three months, like mine. Some intractable migraines can be managed at home, without needing to use more free hospital toothbrushes and eye masks (and graham crackers and juice, and grippy socks). So, I was told I had bad migraines, intractable migraines, but I felt like the diagnosis desperately needed an asterisk.
My husband and I set our sights on a more suitable diagnosis, constantly on the lookout for one that felt just right. Abdominal migraines seemed like a good fit early on, though most of the neurologists I talked with didn’t agree. New Daily Persistent Headache (NDPH) was on the table for a long time, since I developed a 24/7 headache pretty soon after getting my first migraines. When the headache flare-ups became more stabby, this opened up possibilities like primary stabbing headaches and hemicrania continua to layer on top of NDPH, like a headache ice cream sundae. Hemicrania continua was a frontrunner in my mind, because Latin medical diagnoses sound nice and serious. I imagined telling the triage nurse at the ER, “I have hemicrania continua with NDPH” instead of “I have a bad migraine,” and finally getting placed higher up on the infamous waiting room totem pole, which is, I think, controlled by a coalition of triage nurses and the mafia. But before it was clear if I had hemicrania continua or not, my headaches changed again. And then again. And again. No more specific diagnosis stuck for long enough to end up anywhere but in my husband’s Google search history, which was growing larger and larger by the day.
Finding a “better” diagnosis became an obsession, a purpose in a life that was consumed by something that felt much worse than a bad migraine. My husband took the lead (as I couldn’t spend a lot of time looking at screens) and sunk deep into scientific papers, WebMD articles, and who-knows-what-else. He kept looking and kept finding nothing better to describe what was happening to me.
Days turned into weeks, weeks turned into months, and I kept telling loved ones and my blog readers the only thing I still knew for sure: I was having bad migraines*. *. * I wanted to put the asterisk everywhere, even in conversations I wished I could say, “I have bad migraines, asterisk.” It seemed like the only way to make clear that my diagnosis didn’t describe what was wrong in a way that people could really, truly understand.
So that’s how I felt, over and over again: misunderstood. I lived life with an asterisk, wanting to connect with my friends and family but staggering under the weight of experiences and feelings I couldn’t explain. I clung to the fading hope of a better diagnosis, the hope that somewhere there was a WebMD article which could bridge the gap between me and the people around me. So many people with rare or chronic medical problems are desperate for the perfect diagnosis, as I was. Some struggle to get a diagnosis at all, and find it understandably devastating when a name for their problem continually eludes them, or takes a long time to find, like it did for me. I think it’s partially because when you’ve experienced anything that is too complex for words, it’s easy to feel misunderstood, and feeling misunderstood can also feel lonely.
I wish I could tell you the diagnosis journey ended the way I wanted. But we never found the perfect Latin name to summarize all of my problems, and they didn’t name a new syndrome after me, either. (Though I never asked, and I do wonder what the response would be if I asked. I’ll take suggestions in the comments!) But I, like so many others, am instead making peace with having a very niche medical problem and no perfect diagnosis. That means I’ve stopped living life with an asterisk. When someone asks me why I am on medical leave from work, or what I’ve been up to this year, I reply, “I’ve been having bad migraines.” Sometimes I’ll say more, sometimes I won’t.
And I know people will misunderstand, or at least not fully understand, what I’ve been through. Doctors and nurses will continue to misunderstand, too. They’ll never know what “intractable migraines” means to me. You won’t, either, even though you just read this niche blog post on my niche blog. But it’s ok. Because I’ve discovered that in the absence of understanding between people, there is an empty space where other things can grow. Things like unconditional love, and friendship that is given in spite of imperfect knowledge. This is why, since letting go of my need to have a perfect diagnosis and to be perfectly understood, I’ve grown closer to many people without even trying. Because it’s possible to receive love in spite of my asterisks, and to love others in spite of theirs, too.