More WEGO Health Activist Writer’s Month Challenge. Today:
Learned the Hard Way. What’s a lesson you learned the hard way? Write about it for 15 today.
First and foremost, if you are going to dice hot peppers and then masturbate, for the love of all things holy, wash your hands first.
Okay, really, what I’ve learned the hard way — in fact, what I’m just beginning to realize — is how important it is to be my own strong advocate for quality health care.
For starters, though, I need to back up and acknowledge my privilege here. For all but three months of my life, I have had health insurance, and reasonably good health insurance at that. Like I mentioned earlier, the cost of some treatment options has been prohibitive — but I’ve never had to worry about just getting in the door. Likewise, I’ve always lived in areas where someone was willing to try to treat me, even if they haven’t been particularly knowledgeable about my problems and/or I’ve needed to hunt to find them. They existed, and I had the privilege to be able to look. Similarly, I’ve mostly had well-meaning lay support, people who genuinely wanted me to feel better, even if they didn’t understand what that meant.
When I was fourteen, I got my first period. It was hellacious, to the point where I couldn’t function in school. I asked to go home. My PE teacher and my guidance counselor both basically told me to suck it up and deal, thus setting the tone for a lot of my teens.
When it persisted for a second month, my mom took me to the doctor — her own OBGYN — who, over the course of time, offered a number of placating and dismissive options:
- “Early periods are like this. Usually, they even out over time.”
- “Minor cramping is to be expected, but some girls just have a low pain tolerance. Have you tried Midol? What about heating pads?” (This was at a time when one had to stay at home in order to use heating pads.)
- “We always recommend healthy diet, exercise, and weight loss first. If she isn’t fat with that diet right now, she’s going to be.”
- “Well, we can put her on birth control if you like… You’re sure you’re not having sex, though?”
- “If birth control pills didn’t solve your period issues, you might have to reconsider whether they were really that bad to begin with.”
- “If she says these still aren’t helping her, I can write a prescription for double-strength ibuprofen. Be careful with these, though. They’re pretty heavy duty.”
- “Okay. I can try prescription naproxen, but it really is the last I can do.”
- “If the laparoscopy didn’t show anything, that means there’s nothing there to show. I’m not saying that you’re making your pain up, only that it’s not rooted in anything physical that’s happening in your body.”
My point here isn’t even that most of these lines were bullshit in their own right — and all of them were bullshit in context — but rather, that neither I (at age 14-16) nor my mother (who’d come with me as my guardian and advocate) knew they were bullshit. I mean, some of them — like “low pain tolerance” — I suspected at the outset. However, hearing over and over and over again that my pain tolerance must be low — in tones that suggest it is a physical, mental, and moral failing — made me doubt myself. And while I wasn’t a particularly difficult teenager to deal with in terms of the big picture stuff (good grades, no high risk activities, etc.), I certainly had a temper and a Mouth on me. At some point, I cannot blame my mother — who, after all, did not know better and was being led to not know better — for eventually believing the doctors over me.
Fuck. At some point, probably right around the same time, I started believing the doctors over me myself.
Which may have been why it took me until after college and into a real job before I started really dealing with it again. (Note: During the vast majority of my college years, I was able to call on other means of pain relief, options that were less in play once I became a teacher.) At this point, I was three thousand miles away from even my mom and my adolescent physician, trying to navigate:
- A Real Job where sick days are more trouble than they’re worth.
- A rural and remote health care system sans advocate.
- A boyfriend — who really should not have been my boyfriend at the time — who openly derided both doctors and people who expressed pain (particularly people who expressed limitations due to pain).
Because I’d already had one laparoscopy turn up negative for endo, so many people immediately ruled it out as a possibility. I mean, lap and biopsy is the supposed gold standard diagnostic for endo — so if that turned up negative I didn’t, couldn’t, mustn’t have endo. And of course, if I didn’t have endo, my choices were either Hormonal Birth Control or Suck It Up and Deal. Except for the GYN who suggested a radical hysterectomy but refused me a tubal ligation (so I could keep my uterus but get an endometrial ablation). I left his office in tears.
Another move, another partner, a whole lot more record-keeping, and a whole lot less patience. I go into doctor’s visits now armed with symptom diaries and tables and charts, all kept neatly in a little intimidating notebook. I write notes to providers in there as well as notes to myself:
This is what is wrong; this is what requires an acceptable solution. An acceptable solution, by the way, does this but not that. PS — Please be aware that I’m already doing this, this, and this, and I’ve already tried this and that with no success.
I am less afraid to tell health care providers, “No, that does not solve my problem; no, that is not good enough.” Even when I am afraid, I am still much more likely to recognize the “not good enough” truth for myself and to seek a different provider. I file complaints and am vocal when providers flagrantly disregard my respect and needs as a patient.
And yet. I have endo. I have some degree of pelvic pain on a daily basis. It’s not always excruciating, but there is never a pain free day. Layered in with the active endometrial lesions are adhesions, hypertonic pelvic floor muscles, and pelvic nerve damage. Of course it’s possible to say for a medical certainty, but there’s a good bet that the latter were caused at least in part by the former — and therefore a reasonable bet that if the endo had been diagnosed earlier the other complications would be less extensive and severe.
Had I known the exact steps I needed to take in order to make doctors take me seriously and/or refer me to those who had the expertise to help — well, I still think it’s unlikely I would be pain free, but I might be in pain less.
PS — If you do accidentally touch your crotch with jalapeno-inspired fingers, full fat plain yogurt is your vulva’s best friend.