I was thirteen years old, an 8th grader at Pease Middle School, and it was spring. I remember because it was that time of year that the P.E. teacher started letting us run laps outside and we all tried ways of getting out of it. I was in the girls locker room getting dressed when I was hit by a truck of pain. I sat down, sure I was about to pass out. Elizabeth, a girl who always had perfect bangs and doused herself in Exclamation perfume, looked at me and said “I get cramps too!” It was a bonding moment.
The problem was, these weren’t just cramps. These were my insides being ripped apart by a thousand tiny chainsaws. I limped over to the coach and lied and said I had hurt my ankle. (The teacher was a guy, no way I was telling him nothin’ bout no cramps) He eyed me suspiciously but let me sit out. I think he caught on when I forgot which ankle was supposed to be hurt.
And here I am, 23 years later, and I am still sitting out of gym, trying to deal with the pain and not let my teacher know. Now it has a name- Endometriosis. I was officially diagnosed after a laparoscopy when I was 27 years old. Since then, I have had three other surgeries, hormone treatments, countless medications, and a long list of holistic treatments to try to control the progression of the disease.
One thing I have realized in the last year is that part of what happens with chronic conditions is that you don’t feel like you have a disease, you feel diseased. And those are completely different.
On average, it takes a woman 5-10 years to be diagnosed with endometriosis. This is due to many reasons, but one of the main reasons I’ve personally encountered is a lack of education on what endometriosis actually is, and dismissal of women’s reporting of their symptoms. One doctor figuratively patted me on the head when I was 21 and told me that I was way too young to have anything seriously wrong with me, and that all women have cramps.
“All women have cramps”- this is the sentence that smacks the hand over our mouths and tells us to buck up and quit complaining.
In high school, I missed days of school because of pain and bleeding. I remember wanting to try out for a play so badly, but I knew that the pain could happen at any time, and I couldn’t take the chance that it would happen during an audition or rehearsals. I remember classes where I would watch the clock, just waiting and praying for time to move faster so I could just go home. I auditioned for All State Choir my senior year, and almost had to stop in the middle of my audition because I was sure I would pass out from pain. I thought it was normal. I wasn’t TRYING to be stoic or stubborn. I just…thought it was normal.
I was introduced to shame at seventeen, when I visited a gynecologist for the first time and he prescribed birth control pills for the pain I described. He asked me if I had a boyfriend and I said yes. He said “well, these will help with that situation too!” I was mortified and told him that I was not having sex. He rolled his eyes. I didn’t fill the script. It was the first time I felt embarrassed to be in pain, like I had done something wrong, like it was my fault.
So why do I write about it now? Well, it’s not because I have magically gotten over any embarrassment or shame or the feeling of being diseased. I write about it for a few reasons.
It comes back. This is a chronic condition that is managed, not cured. I had a complete hysterectomy three years ago, and was hoping for a long reprieve. It lasted two years. For the last year, I have been trying to treat the low-level back pain that occasionally flares into serious pain. In the last few months, I have been getting recurrences of abdominal pain as well. I can read the writing on the wall. I visited several back doctors, thinking maybe there was another cause to the pain. One doctor was a nut job who told me to crush up muscle relaxers and eat the powder throughout the day. The other doctor sent me to physical therapy and told me he wanted me to take medication continuously to let my body rest and heal. After a few months, the physical therapist told me that she didn’t think I needed PT and that she didn’t think my problem was muscular or spinal. I consulted the doctor and told him that I was frustrated that he was prescribing this medicine, even when I didn’t need it and that he still couldn’t tell me if anything was wrong with my back. He snapped at me that if I was his patient, I was required to fill all medicines and take them according to his instructions or he wouldn’t see me. He told that eventually, I would have to have surgery on my back. Obviously, I didn’t return to his clinic. After that I just tried some diet changes, added some yoga and stretching, and…managed. But this month has been rough, and I gave in and saw my Obgyn again. It’s interfered with life- planning my days, how much I am able to accomplish, physical stamina…and writing. Endometriosis can mess with your immune system and cause fatigue as well, and I definitely have felt that. There is a weariness that I push through most days, and some days I give into.
I write about it because I still have to convince myself that having endometriosis is not a character flaw. It has forced me to confront my people pleasing habits- I hate feeling misunderstood, and there is a lot of misunderstanding in this disease. It is hard for me to accept that I might go to an ER someday and be seen as a hysterical female, or worse, a suburbanite drug dealer. It is hard for me to accept that I can’t control that. I have been forced to let go of the fact that there will be family, friends, and doctors who dismiss me. It has forced me to confront my theology of suffering.
But the main reason I write about it, the reason I chose to be open about something so personal, is this- it’s because when I finally read stories of women who can’t wear jeans for an entire day because the pressure on their stomach cause nausea, I cried.
I’m not the only one.
Because I read about women who search for years for answers and help and who are dismissed and patronized.
I’m not the only one.
Because I read about making the hard choices about pain medicine, hormone treatment and surgeries.
I’m not the only one.
This is precious to me. This is comfort from Him and I am thankful. And I write so that someone will know they are not the only one.
Email me at firstname.lastname@example.org
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