RA Diaries: It’s my tough choice, not yours

A few days ago, I finally had to face the truth.

My right knee, AKA Glenn, isn’t getting better. Sure, I’ll have a day or two without pain, but then it comes back with a vengeance, and it doesn’t matter what I’m doing. It hurts when I sit, it hurts when I stand up, when I walk, even while I sleep.

I wake up in the middle of the night with stabbing pains, and can’t go back to sleep, because no position is comfortable.

Doubling up on medication doesn’t help for long. Neither does heat.

As a result, I’ve been staying home a lot. I’ve missed a math class because the pain was such that I didn’t think I would be able to concentrate on the lecture. I’ve missed a friend’s birthday party because the idea of standing around in a bar making small talk while in pain wasn’t appealing. I haven’t gone to the farmer’s market or any place that requires a lot of walking. I avoid anywhere with stairs.

But I can no longer live like this, so yesterday, I finally went to my doctor. She drained my knee and gave me a cortisone shot. She also put me on methotrexate.
Methotrexate is a remittive agent that suppresses the immune system. It is used to treat a number of auto-immune disorders, and is one of the milder and most time-tested medicines in that group.

This is not the first time I’ve taken methotrexate. In fact, I’ve been on and off it for about 17 years. But every time I’ve taken it, I’ve done so with trepidation. It is, after all, still strong stuff. It’s used, at higher doses, in chemotherapy. It comes with charming side-effects like nausea, exhaustion and hair loss.

It can wreck your liver and kidneys and requires frequent bloodwork. I am very hard to get blood out of, and dislike being a pincushion. Oh, and alcohol? Forget about it. It’s a good thing coffee is my only drug of choice.

But all of that pales in comparison to the fact that I absolutely, positively cannot get pregnant while on it. The smallest dosage (and I’m taking double that) can do horrible things to a developing embryo. It can be born without a brain. It can be born with stumps for arms and legs. And that’s if it implants at all. Methotrexate can also induce miscarriages, and is part of some abortion drug cocktails.

Because the medicine is so strong, pregnant women aren’t even allowed to handle the pills, lest the medicine be absorbed by their skin. Women who administer it to cancer patients are counseled to stop doing so should they become pregnant.

The idea that I can’t get pregnant at this time is not the problem. My spouse and I decided some time ago that we are child-free by choice. The flip side of that decision, though, was that if we do happen to have an “oops,” we would go through with the pregnancy.

Now, that is not an option. There can be no “oops,” and if there is, there would be no question of playing Russian roulette with a pregnancy. As far as I am concerned, I would be criminally negligent if I did this. Even if the baby got off easy, with, say hydrocephaly or foreshortened limbs, what kind of life is that? I’ve spent my childhood and adulthood battling a crippling disease. I wouldn’t wish that kind of pain on anyone. Besides, it’s one thing to get pregnant and then discover one’s child has a condition. It’s a different thing to conceive a child knowing full well the chances of such a thing happening.

The hell of it is that, if I did take my chances, I would not be able to truly confirm any major defects until the fifth month of gestation. And if there were defects, getting a late-term abortion would be difficult, since there are so few doctors these days who are trained or willing to perform them.

I’ve always been pro-choice, but when faced with the situation I described above, it redoubles my conviction and makes me even angrier at people who picket and block clinics. The women going in there are already making a tough choice. No one has an abortion for fun.

And the choice is ten times tougher when you have to choose between permanent pain and disability or a healthy baby. But these protesters don’t care, and why should they? It’s not their problem. It’s not their life. It’s not their choice.

I am going to do my utmost to avoid having to face such a situation (though I hope we won’t have to resort to kevlar suits and an airlock), and I am fortunate that I live in an area where people don’t object to birth control. I am confident that I am unlikely to come across a pharmacist who is unwilling to sell me the pill on religious grounds. If I were ever to decide on an IUD, I am also sure I could find a doctor willing to fit me with one without judgment.

That is sadly not the case in other parts of the country, where women have told horrible stories of being denied such things and shamed in the process. And one of the Bush administration’s final acts was to convince the DHHS to classify hormonal birth control and intrauterine devices as abortifacents, which meant that healthcare professionals with religious objections could refuse to help women who wanted them.

The thing is, the pill is the best female contraceptive option in my case. It works well and I respond to it well.

I have mentioned in other entries that the world isn’t exactly designed for people like me. This is also the case with contraceptives. Yes, there are non-hormonal options available for women, like the sponge and the diaphragm, but they require a dexterity I cannot muster with my bent fingers and crooked elbows. That also puts the much-touted Nuva Ring out of reach (pun intended).

I realize there are other options, like sterilization. But I am hoping that I won’t have to be on methotrexate forever. And even if I am on it for a while, menopause is not that far around the corner, so in about a decade or so, none of this will be an issue.

I suppose the least morally fraught thing to do, at least from the point-of-view of the religious right, would be to stay away from sex altogether. But that’s not the kind of marriage I want. It’s not fair to me or to my spouse.

And frankly, it buys into society’s general belief that the disabled should not have sex because they are defective. After all, the disabled are not sexy, right? Only abled people, preferably attractive abled people, are supposed to express their sexuality. Anything else is a freak show, or fodder for paraphilia. I dream of a utopia where that is not the case.

Gaah. I have covered that before, and will likely cover it again. In the meantime, I am embarking on my new medical regimen full of hope.

Hope that I will feel better. Hope that my precautions will be enough. And hope that the toughest choices will always be mine to make.

All text copyrighted by A.K. Whitney, and cannot be used without permission.



  • Interesting read. I also take DMARDs and have thought extensively about the issues you address here.

    I largely agree with you, but I just had a teensy issue with this sentence:

    “Even if the baby got off easy, with, say hydrocephaly or foreshortened limbs, what kind of life is that?”

    I don’t think my life is worth less because I have chronic pain. I also realise that not everyone experiences their pain the way I do mine. I guess I just wonder if there isn’t some mileage in challenging the idea that it’s automatically cruel or irresponsible to have a disabled kid knowing from the very beginning that the baby will be disabled. There was a post on FWD/Forward about this a wee while ago.

    (I know also know that MTX is one of the Big Kid Drugs, and can induce miscarriages, so I know it’s not as simple as just saying “there’s a major risk the baby might have disability” since there’s also a risk of early-term miscarriage. I guess this is hypothetical as much as anything else.)

    Of course, when someone doesn’t want kids for whatever reason it’s absolutely crucial that they have access to accurate information, contraceptive and abortion services, and a high standard of care and advice with regard to (a range of) contraceptive options. No quarrels there.


  • Thanks for your thoughtful comment. And I am completely with you when you say your life isn’t worth less because of chronic pain. Mine isn’t either. But if I have a choice of pain or no pain, or even less pain, I will go with less pain/no pain. There is so much I want to do with my life, and I only have one guaranteed life, and the pain is preventing me from experiencing it.
    And as for your challenge, we will have to agree to disagree. As I wrote, it’s one thing to find out mid-pregnancy that there is an issue; it’s quite another to conceive knowing full well that the odds are against the baby not having severe problems. But then, that’s my personal choice, and a tough one, and one I hope I will not have to make.

  • “that’s my personal choice”

    Indeed it is.

    I wonder, however, if there is a sense in which our choices are constrained by the fact that society believes that disabled women are cruel/irresponsible/selfish if they decide to have kids. That is, I’ll defend individual women making the reproductive choices that is right for *them*, whatever that choice happens to be, and in whatever circumstances. And I wonder if part of that isn’t saying: actually it’s not selfish in the general case for disabled women to have kids (even if individual women chose not to for disability-related reasons).

    In other words, I can support your reproductive choices being your personal choice, and still think that you would not be choosing “wrong” or selfishly or whatever if you were to make a different choice.

    Does that make sense?


  • It definitely does make sense. And here’s the thing — had I wanted children, I would have had them long ago. My RA does not preclude me from being a good mother, and disability (or age — a number of my friends are having babies in their 40s) should not be held against women who want to have kids. Motherhood is not only for the abled. Or rich. Or beautiful. Or white. I could go on forever, and I see the political and social ramifications you’re talking about, and I do not wish to feed into them.
    But sometimes, choices are just crappy all around, and you make what you hope is the least crappy one you can live with. If I knew a woman who was dealing with my situation who did get pregnant on methotrexate, and decided to take her chances, I would support her. And I hope she would support me making the opposite choice.

  • So it sounds like we agree more than we disagree. 🙂

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