Sunday, October 23, 2011

Migraines and Me: Part Two by Alex Snider

One of the biggest hurdles I've faced with migraines has been my own perception of them. Similar to the stages of grief, I've had to face down shame, blame, guilt, depression, frustration, denial and anger to get to a place of relative acceptance. It wasn't necessarily in that order, and I've not necessarily left any of those unhelpful emotions behind but more and more acceptance is dominating.

The journey and the struggle to get to acceptance of this chronic ailment is one that for years I didn't even know I was on. As I mentioned in part one, only recently have I been able to even call the migraines an illness due to the implication of some sort of severity. But something that knocks me out for days at a time, several times a month, that leaves me sobbing and heading for the ER, that seriously affects my quality of life is severe. It stuns me that it took nearly sixteen years to realize it. 

Why did it take me so long? I'll never know for certain but I have some theories. There's the stigma of illness and my internalization of patriarchal ideas linking women and weakness; I wanted to be tough, strong – having started when I was 12, it took me a long time to revisit those notions. Besides, headaches just didn't seem like that big of a deal; once my first CT scan came back clean the threat was removed and they seemed to just become a frequent, mundane inconvenience. If doctors weren't going to be bothered then who was I to make a big deal?

I think one of the biggest influencers, I feel, was the 'friendly advise' that people would give. Everyone had an opinion when it came to how to stop the migraines. Sometimes strangers, sometimes acquaintances, sometimes friends (or when I was younger, my friends' parents), lots of times family members. 

Drink lots of water!
Don't drink alcohol!
Sleep 9 hours!
Eat lots of vegetables!
Take __ vitamin! 
Drink __ tea!
Cut out __! 
Exercise more!

Some of the advise was based on personal experience, some of it based on research, some of it based on food trends, most of it common sense, all of it out of concern and desire to help. The problem was that with the advise, unintentionally, came undertones of shame. It pinned the responsibility of the migraines on me. With every bit of advise I felt more and more like the migraines were not a physiological thing, but just a result of my own laziness, gluttony, refusal to "take care of myself". 

The advise and the lack of interest from my doctors to get to the root cause created a perfect storm for destructive thinking. I blamed myself every time I had one, which made them more severe given the tension. I believed that I was hurting myself, that the migraines were my punishment for not being better (???).

What is worse (I know, worse than shaming myself for having a chronic ailment!) is that I conditioned myself to accept that in addition to the excruciating pain, missing out on days upon days of my life was further punishment for my inadequacies. For staying up too late, for not eating right, for not exercising one day, for getting drunk. 

Considering that I'm not religious and that I wasn't raised in a religious household (outside of infrequently attending the United Church across the street and for two years going to a Baptist school which is a whole other – hilarious – story), I've got enough guilt to make the Pope wince. 

So what happened that reversed that negative thinking? Again, I'll never be able to pinpoint it exactly but I've got some ideas. There was going back to school and missing scores of classes and exams really lit a fire under me to figure something out a solution. There's just the fact that I'm getting older and maturing, taking better care of myself and so when the migraines persisted with the same frequency it was kind of like a little alarm going off. 

But the biggest thing that challenged that mindset was probably that I went through a serious depression in which I tried to kill myself. And I'm one of the lucky ones, more than getting through it, I've thrived in the two years since. The therapy helped the migraine-guilt in a immeasurable way, of course, but there was still the issue of apathy about losing huge chunks of my life. 

It took me a long time, more than a year, to be glad to have survived. Not that I continued to be suicidal but to be in a head-space where I was genuinely grateful to be alive. I was perfectly capable of having fun and being happy but the cold fingers of depression that had been clamped tight on my brain for so long, continued to linger. Like with the negative migraine thoughts, I don't know when I broke free completely. It's not something I like to think about and I still get really emotional thinking about the actual event, but now that I have gotten through, it's so clear to me that losing hundreds of days to "just headaches" is a big fucking deal. 

Where this has left me now, this newfound love for life paired with the still-uneasy recognition of the physiological aspect of migraines, is back at square one. Back to hitting up experts and specialists, trying new drugs. It means asking for help, something I've never done before: I'm in the midst of registering in Accessibility Services at school so I can have access to notes when I miss classes and bypass the bureaucracy when I miss exams or deadlines. I'm learning to accept that migraines are a part of how my body works, that they're not my fault. I'm learning to live my life around them.

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