Today is Chronic Migraine Awareness Day.
What do I say about something that has changed me and my life as fundamentally as Chronic Daily Migraine? Actually, quite a bit.
But I thought I’d start with a story about why I say anything at all about it.
Once upon a time, almost 6 years ago, there was a woman whose entire life was turned upside down and inside out…and that woman was me.
I’m a mom of four, a grandma of four adorable grandspawns, a daughter, a sister, an animal lover with 16 outside cats (9 are kittens), two inside cats (I know, crazy cat lady, that’s me), two box turtles, and a huge German Shepherd slobber machine. Most of our pets are rescues.
I love rock and alternative music, I write poetry, I am an artist, and I advocate for awareness of mental illness, chronic migraine/chronic pain, and domestic violence. I write articles on occasion for The Mighty .
I am also one of the approximately 25% of migraineurs in America who suffer from chronic migraine, defined as 15 or more days of migraine symptoms/pain per month; at best, it’s like taking half a month and throwing it in the trash, and for me the symptomatic days number higher.
Understand that this is WITH treatment from my primary care doctor and a specialist; daily chronic migraine in particular is just very hard to treat (if you’ve found this blog, you probably know that already). Part of the problem is that we still don’t know much about migraine; although it’s ranked as the seventh highest cause of disability worldwide- as disabling as quadriplegia, active psychosis, and dementia, according to the World Health Organization- migraine receives less than 53 cents per person in allocated research funding. That’s much lower than many serious conditions.
For me, this condition is truly disabling–since 5 years ago when my episodic migraines progressed to chronic daily (that’s 24/7, 365 with a baseline of symptoms/pain that never leave), I’ve dealt with job loss, loss of time with family, loss of health insurance, having to give up going back to college, losing people I thought were friends who just don’t think my disorder is truly serious or for whom someone with chronic illness just doesn’t fit into their lives, and the grief of losing who I thought I was and the life I had.
One of the challenges I face isn’t physical; it comes from outside sources, from people who don’t understand this condition. Sometimes, people assume that I am still struggling because I’m not motivated enough to find proper treatment. However, it isn’t as simple as just calling your nearest neurologist. Most people think a neurologist is an expert on headache disorders, but not all neurologists are migraine specialists, and not all headache specialists are neurologists. Unfortunately, for the 38ish million migraineurs in America, there are only a bit over 500 headache/migraine specialists…which means many migraineurs may not receive an official diagnosis of migraine for years, and may have to travel farther for treatment. The wait to see a specialist can be months. Trying out all the medications used to treat migraine can take years if you aren’t lucky enough to find one off the bat. And many migraine sufferers don’t ever seek treatment, because the belief that it’s just a bad headache is so prevalent that non migraine sufferers aren’t the only ones to buy into it. I’ve talked to many migraineurs who don’t know much more about their disease than the general public, either because their doctors aren’t knowledgeable about it or because they don’t think it’s serious enough to seek treatment.
I was also diagnosed with depressive disorder 4 years ago, which is very common with any chronic illness, particularly a disabling one. In the right circumstances, most people would expect some degree of depression… for example, when a person with a life-limiting illness who has few options for relief cannot see an end to the pain. People might even consider it odd if that person DIDN’T suffer from depression.
But although living with chronic migraine is what brought me to being diagnosed, I’ve lived with depression most of my life, much of it in denial that I WAS depressed. It was very easy to write off my dark spells as reactions to situations in my life…growing up with an abusive father, an abusive marriage, raising 2 kids who are diagnosed with mental illnesses themselves, stress, etc. However, my reasoning was pretty selective, because it conveniently failed to explore the fact that I self-harmed from my teens into my late twenties, as well as a suicide attempt at age 19 that was very nearly successful.
But when the Chronic Migraine Fairy arrived, I couldn’t distract myself with the problems and people in my life anymore; I had to accept that they weren’t solely responsible for those dark emotions and trips down the rabbit hole, as I call it (hence the name of this blog). And as my antidepressant medication brought me to a more stable place, I realized that clinical depression is different than being extremely sad over a situation….and that the dark places my mind had been were as familiar as an old friend, because I’d been there before.
Depression lies to us. It tells us our problems aren’t important. It tells us we aren’t important. And its voice is powerful and persuasive. It can even convince it us it doesn’t exist, at least for us.
Many people see mental illness as a character flaw or weakness rather than a disease as real as diabetes, even those of us living with its impact…but it is so important to realize that many mental illnesses have a genetic or physical cause, such as chemical imbalances that regulate mood or affect our thought patterns.
Seeking help for a mental illness is no more a weakness or character flaw than going to the doctor for a “physical” illness.
The silence surrounding mental health needs to be broken. If you are dangerously depressed or suicidal, it is not weak to get help. It’s one of the hardest, bravest things you can do. If you aren’t taking advantage of every possible weapon in this fight that may help you cope better (be it therapy or medication or both), you are putting yourself at risk…and you are too loved, needed and important to lose.
Too often, we with chronic or “invisible” illnesses feel very alone, even with supportive friends and family…because no one who hasn’t been down our particular rabbit hole can’t truly grasp what we fight every day.
In writing this blog and sharing my experiences and struggles, I hope to help others feel less alone in this fight.
Since the original writing of this story a few years ago, I’ve also been diagnosed with anxiety and tardive dyskenesia. I’ve lost medical coverage, and subsequently lost treatment for migraine disease. I’m still receiving mental health treatment (thankfully) through MHMR (government service for low income).
It’s been hard. I’ve been without treatment since October 2016, and I won’t lie, I’ve danced around the Rabbit Hole a few times since then. But I’m surprisingly okay mentally and emotionally. I have my bad days like anyone else. Some are very bad; that’s where learning to spot the Rabbit Hole up ahead has mattered most.
I’ve even come to see the good in my Rabbit Hole, because like most things (and people), it’s neither good nor bad–it just IS. Sometimes pretty, sometimes treacherous.
But always part of me.
Physically…it’s definitely been much more limiting to not have treatment. It’s a given that my symptomatic levels are not good most of the time. (Probably one contribution to my upped anxiety.) I’m still in the process of seeking disability, and am on my 3rd denial. (More fodder for anxiety.) It’s probably time I bring in a lawyer, but I’m feeling ridiculous, unexplainable trepidation about finding one and keep putting it off, which I’m sure isn’t the best for me…I’m working on nerving myself up for it.
But I’ve survived this before, the No Treatment Merry Go Round…I’ll survive again. I’m just fighting a bit harder, and taking more time for me.
The journey has been and is painful. There’s no way around that. I never expected this life, and never would have chosen to be this person.
Yet here I am…I’m not sure if I’m actually making the best of what I was dealt, or just trying to give myself a reason to think that’s what I’m doing.
All I know is…once you’ve been down the Rabbit Hole, you’re never quite the same again.