Learning That Disability Isn’t Your Fault

“So I’m going to keep getting better, right?” I asked.

My neurologist looked at me for a moment. “Probably not,” he said. “Migraines are an oversensitivity of the brain. There’s no cure for that. It will fluctuate. Some months you may have no symptoms, and then it will be very bad for several weeks because you were exposed to too many triggers. And we can’t know what all of those are.” So it’s chronic now. From now on, the meds, the constant fatigue and dizziness, and the weekly migraines are probably as good as it gets.

It has been for nearly a year. And for me, one of the hardest parts of developing a chronic illness has been confronting my own prejudices.

Since the age of seven, I’ve been an athlete. At 12, I saw my first nutritionist. At 15, I started a lifelong regimen of weight lifting. At 17, I saw my first physical therapist. I believed that my healthy, active lifestyle would guarantee a healthy life.

This is patently false. What’s worse, I started to generalize it. When I looked around at other people—often women or people of color or LGBTQ folks—who developed chronic illnesses or disability later in life, it was too easy to dismiss them. I saw health as a direct consequence of personal choice. I looked at people like myself and thought, “Well, that’s what you get. You didn’t eat right or you didn’t exercise or you didn’t get enough sleep, and now you’re suffering the consequences. It sucks, but you did this to yourself.”

So when it happened to me, my first response was denial. This doesn’t happen to people like me.

I am an otherwise healthy person with a chronic illness. But that, too, challenges my stereotypes. How can I successfully lower my cholesterol through diet and exercise the same year that my migraines become chronic? It defies my own assumptions about ability and disability.

When I had my first migraine at age 12, my father had violently attacked me earlier that year. I believed he was trying to kill me. Then, we moved from a community where I had felt secure and cared for to one where I felt invisible and unimportant. I stopped talking. Period. And the migraines began.

Stress is a major trigger for migraines. Trauma even more so.

And at age 31, two men I had considered friends assaulted me right on the heels of my divorce. The migraines returned. And this time they stayed.

The much larger truth is that our lives are an ecosystem—a tapestry. How we treat each other has a direct impact on our hormones, which have a direct impact on how well our bodies work. Everyone knows that chronic stress is bad for our health. But we are also learning from epigenetics that external stressors can turn genes on or off.

The message here isn’t that diet and fitness don’t matter—they do. I am infinitely healthier than I would be as a couch potato.

The message is that sick people are often the consequence of a sick society. A society that puts stress upon a child’s body, that turns a blind eye to abuse, that does not give people the support they need to build a life beyond poverty, or that alienates and discriminates against specific populations—this society has a higher healthcare bill. Bodies break down much sooner than they should. And we all end up paying for it in the end, one way or another. The solution isn’t just to give healthcare to those who need it. The solution is also to work on preventing abuse, assault, and discrimination.

Don’t let your loved ones wind up where I am. Teach your boys about consent. Teach your girls about boundaries—there is no person with whom a girl should not set firm boundaries around her own comfort and well-being. Speak up when you see parents mistreating a child. Support legislation that will give families in poverty a way to transition into better jobs. Work on your own racism and homophobia to build a stronger society. And above all, remember that how we treat each other is the very stuff our lives depend on.

To learn more about how stress and trauma impact lifelong health, click here: https://www.ted.com/talks/nadine_burke_harris_how_childhood_trauma_affects_health_across_a_lifetime?language=en

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