Editor’s Note: Today’s post is the second in a series of interviews with women living with disabilities and/or chronic medical conditions.
Name: Sadie Kay
Blog: Radical Consent
Bio: I am a young professional in my mid-twenties.
1. What is your disability or chronic medical condition? How does it affect you both generally and on a daily basis?
I’m bipolar. For the most part, I’ve developed enough workarounds that I can live with my condition – though I am certainly not at ease with it. I’ve been diagnosed long enough that I find that the medication affects me more than the illness itself. I tend to be very tentative in the world because I am so used to part of the fabric of my perceptions getting pulled out from under me. Short term, because I feel that my illness makes me undeserving, I’ve spent a lot of time living in survival mode, scavenging what I need, emotionally and socially, to get by. Long term, one of the hardest things about being bipolar is keeping secret the reason behind all the differences in daily routines that taking medications brings about. I have to have a consistent story about what I don’t do and I have to stick to the story.
2. Do you consider yourself “disabled”? Do other people see you as “disabled”?
Yes and no. I consider myself disabled, but I very rarely use these words in describing myself to another person. I feel like disability is something more serious than what I have. I also struggle with my own tendency to see disability as a lack, or a failure to be “normal,” so I hesitate to identify that way publicly. Privately, I know that this illness makes my life, my day-to-day existence, hard in a way that I wouldn’t otherwise encounter.
But no, I don’t identify publicly that way. And others don’t see me as disabled, probably because they don’t know about my condition. I haven’t been able to give up hope that I’ll transform into a non mentally ill version of myself, and so I spend a lot of public energy keeping up appearances.
3. Do people treat you differently or unfairly because of your disability/condition? How so? Can you give an example(s)?
There’s the inevitable “have you tried x cure yet….?” Even so, lately it’s been less that people treat me unfairly than that I dread their doing so. A few years ago, when I first started school, my health insurance company denied me medication that I needed and had been prescribed. When I went to the student health center to find a doctor to advocate for me, the center called the cops. They kicked me and hospitalized me against my wishes – for asking for an advocate, for admitting that I wasn’t taking medication I couldn’t obtain. Because that was the first time I asked for help I have little to compare that experience to. Though most of the injuries have healed, I still fear reaching out for help because of those events. As a result, I feel like I’m expected to be super-human: never ask for help, never admit weakness or exhaustion, never break.
4. If you could tell the world one thing about what it’s like to live with your disability/condition, what would it be?
It’s not the disease that’s bad in itself, it’s how people treat the disease that makes mental illness unbearable. I suffer far more from well meaning or fearful or just plain bigoted people who haven’t bothered to learn about who and what I am before judging me than I suffer from being bipolar. I don’t mean just the big things like the insurance denials and the difficulty of finding a doctor who doesn’t judge me and trying to find someone who’s willing to date a crazy girl – I mean the little comments like “I’m so schizophrenic today!” and “wow, are you pmsing or are you just crazy?” They make a difference, you know. To me, if not to you.
5. What do you like about living with your disability/condition?
As much as I complain and am scared of it, I love the fragility and contingency of my life with a mental illness. When I had my first break I hallucinated. A lot. Over time, I learned that my mind can’t manufacture shadows for hallucinations, and I go through a phase during and after hallucinations where I check for reality by gauging the shadows of everything I see. I really like this phase. I spend so much time paying attention to shadows and sunlight that I find the world stunningly beautiful. I find my mind’s ability to repair itself again and again and still see sunlight and shadows instead of bugs under my skin something of a miracle.
6. Is there anything else you’d like to share?
I don’t know how many other people feel this way, but I see my illness as a kind of constraint. There’s this imaginary other-me, who I would have or could have been if I wasn’t bipolar, that I measure myself against. And when you struggle with a mental illness, measuring yourself against your hypothetical self is a good recipe for feeling that you-as-you-are don’t measure up. But then, I feel that I don’t fully measure up as disabled either. I just think it would be helpful if we could recognize that normal and disabled are continuums, not absolutely itty-bitty boxes we have to fit in the same way.
"Dumbo... gives you an idea of what it feels like for me: skydiving without a parachute" -Sadie Kay
Sadie makes an excellent point about in question four about people’s attitudes and perceptions being more disabling than the disability itself. The comments about “pmsing” and the like are heartbreaking. Regarding the “cure” questions people ask her, I think many people tend to think of people who have disabilities as needing or wanting to be “fixed,” and tend to medicalize disability. I wonder if she feels the invisibility of her disability is also stigmatizing — even her insurance company doesn’t take her seriously. And the clinic and cops treated her like a deviant, like she wanted drugs, was faking her condition or imagining it. Ignorance all around! Expectations can be suffocating, especially when you’re in situations where you have to PROVE your challenges or conform to people’s perceptions of illness or disability to gain their support.
Fascinating read. Thanks Danine and Sadie for sharing.