Wednesday, December 21, 2016

Every body goes haywire.


Finally found the time to read Every body goes haywire by Anna Altman. A friend had shared it with me months ago.
Joanna Kempner, a sociologist at Rutgers and author of the recently published Not Tonight: Migraine and the Politics of Gender and Health, writes that “people worry when they cannot fulfill their end of the so-called sick role, an implicit social contract in which sick people are given leave of their everyday duties, as long as they adhere to certain rules like seeking appropriate medical care and working hard to get better. But these obligations are difficult to meet when there is no effective treatment.”
Ooooof. This has been a bit point for me the last two years. Getting it into my head, and accepting that I have a lifelong, chronic condition. There is no endpoint, other than the big endpoint.
THIS INHERITANCE AWAITS MANY WOMEN. Almost 20 percent of women suffer migraines, and 75 percent of migraine sufferers are women. That same group of hard-to-diagnose and hard-to-treat diseases—lupus, rheumatoid arthritis, and multiple sclerosis, but also chronic fatigue, chronic headache and fibromyalgia—primarily afflicts women. “Women are more likely than men to be disabled by chronic illnesses,” Susan Wendell writes, “and women (including women with other disabilities) suffer more ill health than men. Women live longer than men, but much of that extra living is done with a disabling chronic illness.”
...
Wendell points out that those chronic conditions bring with them the kind of invisible impairments that can cripple a patient without appearing notable. “Pain and/or fatigue are major sources of impairment in many chronic illnesses that are more common in women than in men,” she writes. It is exactly these impairments that are easiest to dismiss or misperceive as psychosomatic.
...
And doctors treat complaints about such conditions differently when they come from women. Kempner cites studies that show physicians prescribe less pain medicine to women than they do to men, even though women are more likely to suffer chronic pain. Other studies show that women are more likely than men to be prescribed antidepressants and tranquilizers—rather than pain medication—for their migraines. Add to this the fact that migraine is more likely to occur in people with mental health diagnoses like depression and anxiety, both of which are more common in women. All of this makes it hard to untangle migraine and other chronic pain conditions from stereotypes of female weakness and hysteria. The characterization perpetuates the notion of the migraineur-as-malingerer, the sensitive soul disabled by everyday disruptions.
I remember reading about hysteria in feminist health class and man did I not really get it at the time. It took an added decade of navigating the medical system for me to see it time and time again. I remember talking to my most normie friend N when she was on the verge of a burnout from her job. She was traveling internationally several times a year and was working over 60 hours a week. I told her, without mincing words that she should not wear makeup or dress up to go to the appointment (she usually would) because if she looks tired and beat, the doctor will be more likely to believe her. I also mentioned the study about how women often minimize their pain and discomfort out of the gendered habit of "I'm fine" -ing everything. I told her to psych herself up, and not play it off. This is a woman who is neurotically privileged and physically in peak condition.
This is hard to communicate when you appear to be young, healthy, and able-bodied. “To be recognized as disabled, we have to remind people frequently of our needs and limitations,” writes Wendell of women who suffer from chronic, invisible disabilities. The struggle for recognition is constant, even among the most compassionate: “Some people offer such acceptance readily, others greet every statement of limitation with skepticism, and most need to reminded from time to time.”
In my case, much of my close circle has these "invisible disabilities," chronic conditions that do not always display outwardly. There is something especially slippery about mental illness, something we're asked to describe at inopportune times, or when we aren't verbal or when we're feeling better, or when we're in such crisis we're catatonic.
I had my diagnosis immediately. Learning to cope with it takes years.
Illness is the space where I came to understand the limitations of my being. It’s a lesson we all learn but one I learned harshly and twice, first watching my mother and then enduring my own suffering. Now I know that I can lie down for hours without moving. I can meditate. I can stare at the wall and not despair. If I discovered something redemptive in this experience, it’s that capacity for stillness.
Heavy piece, but her closing paragraph really nailed it. There is a natural quiet that comes to you through solitude and suffering. I wish that didn't sound as poetic as it does. There's a resignation in it, an acceptance. But really, what choice do we have?

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