Disability and birth control: part three

This is the final part of a series for Blogging Against Disableism Day. Part one and part two ran previously. See more of BADD 2010.

After I tossed my birth control in the trash, things were pretty okay. My mind was in line, condoms and withdrawal (a tip from another friend) served me just fine, and when it didn't, Plan B didn't knock me too far out of line (at that point).

But after intercourse one night, I had some nasty gas. Or cramps. Something that made me double up next to my partner on the twin bed in his dorm room for an hour. It passed, I went to sleep, and didn't think about it much the next morning. The next day, at work, I doubled up again, on a couch this time. I could not walk it off. A student who had an appointment with me came in, and I had to beg off. I waited a few hours and then called my roommate to take me to the hospital.

After several boring hours at the hospital, pain going in and out, the verdict was returned: ruptured ovarian cysts.

"Could this be caused by birth control?" I asked a nurse. "Certainly, honey!" she replied. I was relieved - I threw that stuff away.

-

I recovered well and went to a male gynecologist whom I was comfortable with, even when he described the discomforting image of my ladybusiness filled with blood from the ruptured ovary. Months passed. In the late summer, I went back in for a check-up. Things were fine until Dr. Man called me into his office. "So, what are you doing about birth control?"

"Well, we've been using condoms and pulling out, but I'd really like to talk about maybe getting a diaphragm or an IUD?"

"Oh no. I only prescribe non-hormonal methods to people in stable relationships."

"Well, I've been with my boyfriend almost two years now, and we're pretty..."

"No, I'm talking like... mortgage, kids together. You're not ready for that yet. I think hormonal methods are much more appropriate for you." He smiled.

"Well, you know, I think that the pill might have caused the ruptures? - "

"Oh, no, that's not possible. This will actually prevent them!"

"But didn't like it that much the first time around, it didn't make me feel good, you know, mentally?"

"Sometimes you have to try several different kinds. It takes a while to get the right fit."

"But I'm not good at taking pills - "

He smiled, and pulled up a NuvaRing, and talked me into it.

Never mind that I said I was uncomfortable. Never mind I said I was looking for a non-hormonal method of birth control. Never mind the strife and pain and suffering that trying hormonal methods, of searching for the "right" (read: hormonal) fit. Never mind that I researched and requested specific other methods. Never mind that I already had a reliable and effective method of birth control.

I was judged too young, too immature, too unstable. I am a woman and a person with disabilities, and for that reason, my input on my own body was dismissed, and another method that had already proved harmful was pushed upon me.

Now, I should say this: I'm sure that HBC can help people with ovarian cysts. But they don't help me - every time I've taken and gone off HBC, I have had ruptured cysts within a few months. I had never had them before I started HBC, and I don't have them when I'm not on it. In some women, HBC and ovarian cysts are unrelated, or helpful. For my body, it's a causation.

Ruptured ovarian cysts are one physical, temporarily disabling ramification of hormonal birth control for my body. But the major tremors were, as I've belabored, mental.

In the month I was on the NuvaRing, I was anxious. I was angry. I was out of my head. I couldn't concentrate, on anything. My sex drive plummeted and I couldn't climax. I deal with OCD on a daily basis, but this was different, meaner. The obsessions and compulsions were full of rage. The trichotillomania was almost violent.

The tipping point finally came when I screamed at a close friend and broke my phone in a rage...brought on by a lost puzzle piece.

(I think this is funny, in retrospect.)

I took out the ring the next day.

--

Things were good, for a year or so. I wasn't on any kind of hormonal birth control, and I didn't get pregnant. I was busy. I wrote two honors theses, graduated with honors, got a temporary job with health insurance, found the perfect apartment with my partner. One afternoon, though, our usual methods malfunctioned, and I had to take Plan B. It most likely wasn't necessary, but my anxiety surrounding pregnancy was only relieved by being extra-careful.

A month later, I went into an anxiety tailspin - deep enough that I am still dealing with its ramifications. I had health insurance, so I got therapy and went to a female gynecologist who encouraged me to look into non-hormonal methods. Getting service from her was too expensive, but another friend recommended a local abortion clinic, who fitted me for a diaphragm for only $25.

I had to try two different sizes. Figuring out how to fit it was frustrating enough to inspire a tearful phone call to my mother. The tubes of spermicide are expensive. It's a pain to remember to take it out the next day.

But getting a diaphragm was the best decision I've made regarding my fertility.

For the purposes of curious readers contemplating different methods of birth control, I'll describe my system with my partner. After foreplay and before intercourse, I insert my diaphragm (it's easier when I'm aroused). We go for a while without a condom. I am comfortable with because withdrawal is 97% effective when used consistently and correctly, because we have both been tested and neither of us have STIs, because we have been monogamous and stable for four years and I trust him, because it feels pretty awesome, and because I have a diaphragm in in case of early ejaculation. When my partner feels that it is necessary and after I have climaxed, he puts on a condom, and finishes.

This is satisfying, exciting, and I feel comfortable and confident in my methodology. Mistakes are rarely made, and there is always a safety net in the case of an accident. We are able to plan our family and our life without worrying about unexpected conception. I have little to no anxiety, even when my (often irregular) period is slightly late.

This is the right method of birth control for me. It was hard won, but you know what? It's an accomplishment in self-care, and I'm proud of it.

--

In concluding this series, I want to reiterate that hormonal birth control can be wonderful and liberating and healthy for many women. This is not a diatribe against hormonal birth control in and of itself. If this works for you, I am so glad.

So, what are the lessons I want to communicate to readers facing choices about their method of birth control?

As with any other decision we make regarding our body, our choices are judged and policed. This is not okay. You should not have to use birth control. You should not feel that you have to use any particular method of birth control. While doctors and partners and friends and mothers are worth listening to, it is your body and your health, and you can do what you want with it. Your body and your reproductive system are yours, and you and no one else knows what is best for you.

Doctors are not the only source of information on the topic, and they cannot dictate what you should do. They are prone to bad advice. Doctors do not know everything and are subject to biases that can block you from finding the method that's right for you. Diaphragms are a valid choice. So is withdrawal. So are condoms. So is the sponge.* So are hormonal methods. There are other methods than hormonal birth control, and hormonal birth control is not right for everybody.

Only you have the right to make decisions about your reproductive health, but that doesn't mean that you don't need help. The words of other women are powerful. Your mother, your friends, your mentors, may very well have information and stories to share. Ask women you trust about their experiences, and talk to them about your options and feelings.

*Thanks to Liss for reminding me of this method!

Disability and birth control: part two

Image: Two round pink plastic cases of birth control on white fabric. One is open to reveal the birth control pills inside.

This is part two of a two three-part series for Blogging Against Disableism Day. Part one is here. Unlike part one, this is a narrative. See more of BADD 2010.

When I was 19, hormonal birth control was just what you did if you were “good” about your sexuality. The (notoriously incompetent) nurse practitioners at health services of the women’s college I attended asked every patient if they were pregnant at every appointment, if they needed birth control – even if they were lesbians, even if their male lover was trans, even if they weren’t sexually active, even when they'd already said no. But even if students mentioned problems with hormonal birth control, or that they used condoms regularly, or that they didn’t have penis-in-vagina sex, birth control was still offered, even thrust upon us. It was a mandatory question, with a disapproving look or tut if it was rejected.

I was excited about the pill. The pill is (according to cultural narratives) what a responsible lady like myself does when she enters into a sexual relationship with the potential of pregnancy. I didn’t want to get pregnant – so badly that even with the pill, we still used condoms and the withdrawal method. I didn’t have a lot of shame about losing my virginity – which is a construct, but it was the construct I used at the time – but there were certain rules I needed to follow.

And it was great, for two months. My sex life was (and is) just wonderful, a revelation, a joy. The pill, too, seemed perfect. It was $5 a month. There were no mood swings or weight gain. And it relieved to a certain extent my paranoia about pregnancy.

The problems began when I went home for the summer, new relationship still intact but suddenly long-distance, friends suddenly 2000 miles away. I continued taking the pill over the summer. I wasn’t having sex but hey, once you’re on the pill, you stay on it, right?

I remember, very clearly, the morning I went crazy. It was quite a simple moment.

One day, I woke up and thought, “what if I have AIDS?”

And suddenly, I could not eat, period. I could not sleep, period. I could not think or read or write. I could not work. I could not look forward to my trip to see my boyfriend. I could not.

This remains the most terrifying time of my life – when my brain mutinied, when I literally could not think of anything else.

The fear ostensibly came from internalized slut-shaming. A year and a half prior, I’d given a few sketchballs some ill-advised blowjobs. None of these experiences were good or healthy, and some of them were not particularly consensual (you’ll be hearing more about this in a few weeks). But all of them were low-risk, and my fear of being infected was disproportionate and unrealistic (though an HIV test is a good idea for any sexually active person). When I got into a completely awesome, empowering, mutually satisfying sexual relationship, the previous year’s misadventures seemed more and more horrifying, in retrospect. I felt bad for myself and about myself. And when I took the pill that I thought made my totally awesome sexual relationship possible, it warped and twisted that shame into a monster that coated my every action and thought.

Even in the midst of this debilitating, disabling obsession, I still took the pill when my phone alarm went off at 6 pm. I’d never been good at taking pills, but I was rigorous about the pill. After all, I didn’t want to get pregnant, and the pill was the only really safe way to keep from getting pregnant, right?

--

I told my mom about it, and it got a little better. I got an HIV test (negative), and it got a little better. I went to see my boyfriend in Virginia, and it got a little better. By the time I came back from Virginia, I felt…okay. Not bad.

I kept taking the pill. I didn’t want to get pregnant.

Two weeks later, at some trivial trigger, my mind, suddenly, was off to the races again, and it just all came back.

It wasn’t health related, or an infection, this time. This time, it was my partner’s ex, and my conviction that he would leave me for her.

One of my partner’s exes began leaving some flirtatious messages on social networking sites. When I saw that, I was garden-variety-jealous and threatened. It didn’t seem like a big deal at first. This is what women do in relationships, right? Cheating with an ex is something we’re supposed to be afraid of, right? But instead of waning as I worked through my internalized sexism, these fears did not leave my mind.

In a paradox: I didn’t actually trust him less – my partner is and was great, and has never done anything to pique my jealousy - but the patriarchy assured me that this competition with a woman unknown to me was normal. My conditioning kicked in and helped the hormones in my body nurse an unfounded anxiety, conditioning me to see my inability to sleep and my waning appetite as okay, as normal, as just part of being in a relationship.

I was in love for the first time, and I was made insecure by the message that society sends heterosexual women: “your man, he is going to leave you. He is going to cheat on you, and another woman will steal him away.” My partner is wonderful and trustworthy and extremely monogamous, and I knew that, and I trusted in him.

But I could not, could not, could not, stop obsessing over it. It was compulsive, too: I checked his social networking page and his ex’s pages several dozen times a day, fearful of the next update or a sudden relationship change that would leave me single and heartbroken.

I wasn’t having sex, but I kept taking the pill. I don’t know why. I just thought that's what you did, didn't realize it had anything to do with my suddenly disability.

I lost 15, then 20, then 25, pounds very quickly. I lived for my partner’s expression of love every night, my one reassurance that everything was okay and I would not lose him suddenly. “Love you”, over IM or phone, would coax me to sleep, slowly – and I would wake up too few hours later and race to check his MySpace. On the rare occasion that he didn’t sign off with an expression of love, I went into hysterics. (He had no idea about my Problems, we’d only been dating a few months at that point).

When I went back to school and regained my support system, things got better. I was still anxious – still on the pill, using several other forms of birth control – but my friends could talk me down from anxiety spirals in ways my mom could not, and self-medication was plentiful. And I saw my boyfriend regularly, which assured me to some extent that I would not suddenly lose him.

In an airport on my way home for Thanksgiving, I finally made the connection between the constant anxiety, nervousness, worry, and the pill. An offhand comment to a friend about it turned to a click moment with her help – maybe this worry wasn’t normal, maybe it wasn’t a natural by product.

I threw away my pills, and things almost immediately got better. I had fun. I gained weight back. I wasn’t free of anxiety, or obsession, or compulsion, but it was no longer interfering.

But it was not the last time reproductive choice, sexism (internal and external) and hormones would gang up on my mind.

Sorry for the lateness of this post - this is difficult to write about. Later this week: Part Three!

Disability and birth control: part one

Picture: Several cartons of Plan B contraceptive stacked one of top of the other against a beige background.

This post is part one in a series. Please check out parts two and three.

This year, Blogging Against Disablism Day falls in the context of a great deal of celebration around the 50th anniversary of FDA approval of the hormonal birth control pill. Since most of my disability experiences have come with the birth control pill, I thought I’d take the BADD opportunity to talk about the intersection and write out my birth control narrative – what works for me, what doesn’t, and what ableism has to do with it.

Birth control is and was often (though by no means always) constructed as an unambiguous win for women. It’s strongly, strongly associated with the birth of the second wave of the feminist movement (though I’ve noted that the second wave is often omitted, effectively erasing the work of the first wave). And hormonal birth control has been wonderful and liberating for women in the final balance. The fiftieth anniversary of hormonal birth control should be celebrated. Hormonal birth control is wonderful.

But it is not unambiguously positive for women. It is not all of our liberation.

Birth control as a topic is simply not centrally relevant or empowering to every woman. Not all women are at risk of pregnancy. Widespread (rather than individual) centralization of birth control in feminism alienates and marginalizes their already problematized bodies: trans women, intersex women, older women, lesbian women, women with disabilities that affect their reproductive system, asexual women, women who want to get pregnant. Not to mention the loaded history of otherwise non-privileged bodies with birth control in light of the eugenics movement.

In the course of discussion of birth control, though, options which are not hormonal birth control or condoms are often erased or devalued. IUDs are unobtainable. Withdrawal is silly and irresponsible. Diaphragms are old-fashioned, ineffective, and irrelevant.

But these are the options those who need non-hormonal birth control. The voices of folks who need and use alternative methods of birth control are ignored or erased in favor of more popular methods. The downsides of these methods are not discussed or dismissed as minimal, marginal.

Women with disabilities are often (though not always) sexual, and some of us are at risk of pregnancy. When we go to the doctor, our questions may be brushed away because of disbelief in our sexuality. Our concerns about certain methods may be ignored because we are women, and not competent to make decisions about our own bodies. Our desires may be blocked due to our finances. Our fertility and desire for children may be discouraged or ignored based on the assumption that we don’t want to pass on to children the qualities and conditions that make society uncomfortable with us.

I’m writing about my experience with birth control for a few reasons.

The first reason: to provide a narrative of my disability and how I’ve experienced it: its causes, its fluctuations, its triggers. Folks with disabilities are socialized to be ashamed of our bodies and our disabilities. It’s important for those of us who can and want to contribute our voices to the conversation surrounding disability in an effort to counter harmful stereotypes and tropes.

Another reason: to provide a practical example of how ableism and reproductive rights intersect, and how feminist and mainstream constructions harm marginalized folks by normalizing some experiencing and othering others.

The last reason: to provide an alternative birth control narrative – a different story of how I’ve prevented getting pregnant thus far. I’m not the only one who’s had hormonal birth control pushed upon me, but I have found a system that’s wonderful for me. I want to share my methods and my journey towards them in the hope that someone whose birth control needs are challenged will find some useful tool in my story.

Check back tomorrow for said narrative. Also check out:

Pregnancy, my greatest fear

OCD, language, and my place on the disability spectrum: parts one and two

See more of BADD 2010.

ETA 5/5/10: I forgot to mention somewhere that trans men are often excluded from discussions of birth control, though many trans men use it. In a post that critiques the discussion of birth control in feminist communities, this erases the experiences of some folks, which is not cool. Apologies.