This post is part of the 2011 Love Your Body Day Blog Carnival.
by guest blogger Robin Orlowski
When will I be loved?
Linda Ronstadt blares in my head even though I’m still not a big fan of country-rock . However, I have always had a very intimate relationship with self-image and the body. So the idea of just one day to ‘love your body’ still seems awkward. We need to work on this project year round project.
The epilepsy medicines which I am prescribed have traditionally not been tested on girls and women— allegedly for our own good.
Estrogen and Testosterone are of course two different hormones—and therefore obviously would react differently in clinical trials. Which seems common sense, right? But the drug companies legally got away for many years with seriously telling the FDA that these products performed exactly the same on both women and men!
So my parents were honestly startled when I began developing in elementary school. I received my first period at 10 years old because of the Depakote I was then taking. I was developing much earlier than my mother.
It also caused some awkward moments for the Girl Scout troop I was then-with. Our troop leader did not want the other girls ‘asking questions’ about the biological process. She was honestly unaware that everything—and anything already was getting shared in the confines of an elementary school girl’s locker room. Brownie troop mates, including her daughter were really comfortable. Actually, they wanted to begin their own periods, viewing it as a fun ‘game’.
Besides, I was far more anxious about the severe acne which a combination of this medication and family genetics was wreaking on my face. It’s really hard to flirt with your classmates when having to figure out how to effectively manage the ‘next’ break out. Upset that pimples were showing up, I wanted to try everything on the market in the hopes of a solution. My family and I actually went to a dermatologist before finally conceding that the same prescription medicines which were used to control my seizures might be causing side effects in other areas of my body.
This was difficult news for everybody to accept–because I had always been treated like another member of the family. We hadn’t wanted to think about something like ‘side effects’ or that I would even have specific body issues because of my disability or the medications needed to control epilepsy. I’d continue having unique and life-long body issues.
Away at college, I then discovered that no matter how many times I visited the campus workout room or avoided junk food, I still gained a considerable amount weight. It was well more than the so-called ‘freshman 15’ because of both the aging process and an adjustment in anti-epilepsy medicine levels.
It was certainly not because of poor eating habits or a lack of will power on my part. Even as a little kid, I loved eating raw vegetables. I was actually one of the few kids who never got coaxed into eating salads. And I successfully resisted the pizza delivery fliers constantly posted at our dorm. But I was still at a loss to fully understand or explain what was happening to my body. It felt like something was invading me.
Classmates and a very supportive boyfriend did not want me to get hurt in order to please ever-critical parents. His fitness classes enthusiastically encouraged participants to love our bodies irrespective of shape or size. We would not be healthy either through skipping meals or the miniscule counting of calories. The only time when this former marine ever got angry was when class participants would actually pass out because they were starving themselves in a relentless quest for the ‘perfect body’: My having ‘meat’ on me was seriously preferable to being an emaciated ‘stick figure’.
Again not making the connection between the epilepsy medication and my body, both my mother and father just kept telling me that I was eating ‘too much’ and needed to be healthy. Dad would warn me that I did not want to end up like my step-mother’s sister who was dying in a Houston hospital from the complications of diabetes, obesity, and poor nutrition.
Wanting to myself prevent obesity and diabetes, these comments still did not support me and my need to be free of seizures despite potential gendered side effects of anti-epilepsy prescription medication. They were much more concerned with image rather than actually investigating the side effects of a specific medication or even if a medication does cause side effects. They were not interested in ‘me’!
The Topamax I later switched to gives me splitting menstrual cramps at the beginning of my period. I’d actually wake up in the middle of the night from sheer intensity. I was amazed that my body could actually produce contractions this strong. Providers knowing about the side effect have not necessarily been comfortable when I wanted to discuss and remedy it.
The ‘world-famous’ neurologist I saw while in Houston seriously blew me off when I informed him that Topamax was causing menstrual side effects. He did not want to either hear about it or help me find a potential (cost-effective) solution. It was effectively controlling my seizures, so part of me did not want to eliminate the medicine.
I was once again getting my weight under control, successfully eliminating the symptoms of pre-diabetes which I had begun to develop with the Depakote. But, he suddenly did not ‘have time’ for me because my information challenged his clinical training that neurology was gender-neutral. And it therefore obviously called both medical training—and ‘professional’ credibility into doubt. Only wanting to hand out a prescription, he had not been interested in seeing me as a whole woman. I was the threat.
Having previously read ‘Our Bodies, Our Selves” it now felt like I was re-enacting the collective’s discovery that the medical profession needed serious reform and existing provider-patient models condescend to women specifically because of our gender. Such a revelation was both enlightening and frustrating in 2007. Too many things still remain the same.
Wheat-based sanitary pads which my Austin-based provider then recommended provide a much better alternative than either suffering through this pain or becoming dependent upon pain relievers. Feeling like I am just wearing underwear—I finally began looking forward to my period.
I developed another worry while unemployed in this economy. Finding transit-accessible employment to pay for this neurological health care is really challenging. People who cannot get away with posting employment ads stating they want a woman or a person of a certain color do openly specify that I ‘must have reliable transportation’—a code word for ‘no people with epilepsy need apply’. Even if their position is within a transit route or does not require driving as part of the position, the employer is still allowed to specify who they want. They can—and do—ask on applications and at interviews what type of transportation I use. My credentials quickly get ignored.
Announcing he does not take MAP, the insurance program for indigent Travis County residents, my current neurologist can choose to no longer see me. The specialty clinic at Brackenridge is directed by a physician who does not immediately recognize when we have outgrown existing medicine levels. Low seizure medication levels lead to dangerous consequences like concussions or death. The EEG which this same woman herself had me undergo for ‘diagnostic purposes’ was oddly never again consulted. She quickly decided I did not need any adjustment in long-taken medication levels, in spite of the symptoms and my specific background history. Grand Mal seizures did not move her into corrective action. Meanwhile, other citizens actually critique this program for being ‘too generous.’
And because Medicaid requires either employment or enrollment in Social Security, properly taking care of women with disabilities bodies is fundamentally impossible in this economy. Women with the most critical needs are barred from accessing qualified health care providers and resources. We’re expected to make do with ‘charity’.
It is a sobering point which I think about while listening to impassioned speeches during the Occupy Austin rally at City Hall: Only certain women’s bodies are considered ‘worthy’ of obtaining adequate health care services.
Pointing out how difficult health care is to obtain, several speakers argue that a genuinely affordable and accessible health care system for all people with disabilities is fundamentally democratic.