Can I have a refund on my brain?

Every morning I look for inspiration to get up. Sometimes I can find it in the little things (like checking my work email or texts from my friends), and sometimes I need to feel understood on a deeper level to feel like I can physically take on the day again. This morning I read an article in The New York Times entitled: There Has Never Been a Better Time to Have a Headache. The hope conveyed in that piece gave me the inspiration I needed to get up.

I’m a high-functioning person with a debilitating secret: I have had an unrelenting, unceasing, incessant migraine since February 2017. Why is it a secret? Not because I don’t talk about it (because, believe me, I do), but because, most of the time, those who I confide in can’t (or don’t try to) understand. It’s an invisible disability. I feel unseen, embarrassed, uncomfortable, and alone. In short, I’d like a refund on my brain, because this isn’t the one I ordered.

I am a lot of things: A friend, a romantic partner, an employee, a colleague, a daughter, and a sister, but, first and foremost, I am my pain.

I have pain in my neck, between my shoulder blades, in my back, around my eyes, above my ears, and in my forehead, temples, and jaw — simply put, everything hurts.

If you’ve ever been hungover or had a dehydration-related headache, or even had a migraine yourself, you might understand a sliver of what I’m referring to. Friends of mine experienced migraines and/or cognitive fog the day after their COVID-19 vaccine shots; I felt horrible for them — no one should have to experience that type of pain — yet I also felt seen and understood. Just for a minute, they knew what every day is like for me.

Once a colleague messaged me while we were in a meeting and said “Are you struggling? I know you can do it, but do you want me to take this one?” As a woman who has always tried to succeed in male-dominated industries, and as a woman who is very stubborn, I refuse to ask for help, even when I’m in pain. I don’t want to appear weak or dumb, but those words from my colleague were magic to me. I heard: “I see you, I see your pain, I know you’re smart enough to do it, but please let me help you.” I cried from relief after the meeting.

My favorite phrases to hear are “I have a migraine, this is impossible, how do you do it every day?”, “I can’t believe you do [XYZ task] while living through the pain you’re in”, “What can I bring you?”, and “How can I make today/this moment easier?”

Instead, what do I hear a lot of?

• “Speak slower” — I’ve always been a fast-talker (I’m a New Yorker, after all), but it’s gotten worse in the past three years as I’ve experimented with a new class of medications. I wish speaking slowly were in my control. I wish I didn’t have to wake up every morning and take a medication to help bring my pain from a 4 to a 2 to make me functional, while also experiencing the unpleasant side effects of speaking like a 100 mph train, getting jumbled in my own words, and moving too fast to make a point, sometimes saying things I don’t mean to say. I come off as anxious, young, and unsure of myself. I don’t like speaking in front of people (really though, who does?), but it’s not nerves, it’s sheer embarrassment that I can’t control what comes out of my mouth. Sometimes I feel like I’m watching myself speak from above, like an out of body experience, and just wish I could rewind, unsure of who is controlling my puppet strings.
• “I don’t understand what you’re saying” — I have cognitive fog, an actual neurological condition where my brain is foggy, and I can’t think as quickly or express my thoughts as clearly as I’d like to. Couple that with my speaking too quickly, and I’m indecipherable sometimes, rolling in circles, unable to find my way out of one thought and into another.
• “You’ve lost weight” — I wish I hadn’t. I can’t eat: I’m constantly nauseous, starving, and dehydrated. I’m exhausted from trying to find food that my stomach doesn’t reject. I wish I could enjoy meals. Eating is an activity that used to give me pleasure, but now it’s a forced task, one that I have to schedule in my calendar or have friends hold me accountable for.
• “Have you tried Advil/Imitrex?” — It takes everything in me to not punch the person who offers this advice (a sister to “Have you tried yoga?” and “Maybe you’re just stressed, have you tried therapy?”). I know that my condition is hard to respond to, and that the person is trying to be helpful in the best way that they know how to, but please, just don’t say it.

I love my doctors, they are wonderful and intelligent individuals. But given that there are only 500 headache specialists for 38 million Americans suffering from headaches, I also spend a lot of time doing my own research. The medication I’m currently on (the one that makes my brain and mouth go “zoom zoom”) is something I researched myself — an off-label use of a medication — and brought to my neurologist for approval. I’ve even gone a step further and taken Stanford Medical School’s online migraine course, intended for neurologists, in the hopes that I would find an answer (shocker: I didn’t).

So what do I actually have? What is my condition? I think I suffer from a condition called New Daily Persistent Headache, which impacts only 0.03%-0.1% of the population. So, yeah, I’m pretty rare. The reason I think I suffer from it, but don’t actually know, is because no medication has ever worked for me (trust me, I’ve tried almost 50 of them), my pain has no obvious triggers, and my symptoms don’t line up perfectly with this, or any, condition. A doctor once told me that one of the reasons there is no cure for this condition is because there aren’t enough people who suffer from it to study it.

As if that weren’t enough, I also suffer from a cerebral spinal fluid leak, where I struggle to stay vertical for long periods of time without being in significant pain. I easily lose hearing in my right ear and frequently feel like I might vomit. My brain is literally sinking into my skull every second I’m upright.

Every day, everything I do is a calculation: What time I wake up, what medication I can take, how the side effects will impact my day, what I can eat, what I can drink, who I can see, what work I can get done, what meetings I can handle, what social plans I can make — the list goes on and on. It’s exhausting. I’ve become this hyper-neurotic person I don’t recognize.

Every night, I lay in bed and wait for my pain to overwhelm me, for my body to give up until I pass into sleep.

In the end, I am so proud of myself every day for simply getting up. Chronic pain can be ugly, lonely, and incredibly overwhelming. But it has also filled me with immense optimism that the future has to be better, and profound empathy for others and their unique battles.

When you suffer from pain like this, you have to live somewhere between hope for a cure and acceptance of your condition.

A sprinkle of humor doesn’t hurt either, just ask my spinal leak cyst: I named it Nerbert.