On my Facebook memories page, I found an old Tumblr picture that includes stories from a series of girls talking about how their appendix burst because they didn’t realize the pain they were feeling wasn’t cramps. The post goes on to explain the difference between menstrual pain and appendix pain. The stories were a way for girls to discuss just how painful cramps can be – that appendicitis, which is known to be extremely painful, was not different enough from their regular menstrual pain to be noticeable.
I had shared the post, along with my commentary that the suggestion to talk to your parents or school nurse about pain, even if it was “only cramps”, ignored the reality of most people who experience menstruation who are told that they are overreacting and to suck it up. Many of us have been told that all women deal with it and that it’s not that bad. Even when my cramps would leave me shaking and with a fever, I was expected to go to class and carry on as though everything was normal. After all “every woman goes through the same thing”. (Not all women actually, and not all people who do are women, but that’s another post for another time).
Among the discussion that followed the subject of iron levels came up, as is frequently the case when discussions on menstruation and doctors comes up. I’ve written in my book about how doctor’s misunderstanding of menstruation played a role in my disability:
It is not difficult to find multiple examples of doctors dismissing as cramps a woman’s concerns about abdominal pain near her ovaries that later revealed an ovarian cyst or tumor. It is also common for iron deficiency anemia in women to be dismissed as being caused by menstrual bleeding. I have long had low blood iron scores, only to be told that I don’t eat enough meat and that my period is making it worse. One of the reasons I started taking birth control pills was to reduce my anemia. Years later, when birth control pills weren’t helping, my case was found to follow the pattern revealed in recent studies: that iron deficiency in women is caused not by menstruation, but often by gastrointestinal bleeding. If doctors had taken the time to investigate why I was anemic, it is possible that I would have received a Crohn’s diagnosis long before the symptoms made themselves felt as strongly as they did. It is possible that it would have been discovered while it was still mild enough to be treated with less severe medication. – Young, Sick, and Invisible
I made mention of this fact in this thread, but as is often the case, writing made me realize something that I had never fully realized before. If they had discovered my Crohn’s prior to my arthritis, I would never have been given Enbrel – the first biologic treatment I received for my arthritis. Enbrel, which an amazing drug for arthritis, seems to react unfavorably with Crohn’s Disease. It is what pushed me into overdrive and what made my Crohn’s severe enough that doctors finally went to look for it. It is possible, that without Enbrel, my Crohn’s might never have become as bad as it did.
Even more overwhelming however, was the realization that had they discovered my Crohn’s in High School, had they started treatment then, the treatment would have likely also had a positive impact on my arthritis. The medication I am taking for Crohn’s, Remicade (Inflixamab), is also treating my psoriatic arthritis. Since both are autoimmune disorders, the both benefit from treatments that suppress the immune system.
Moreover, the imaging tests that would have been done in the process of confirming my Crohn’s might have caught enough of my back or hip to suggest arthritis to the doctors. I might have been diagnosed and starting proper treatment long before my leg was damaged as much as it was.
A lot of this is speculation. It is possible that none of this would have happened had they looked, but it is possible they would have. If I had been diagnosed while still living at home, I would have gone to my parent’s friend who was a rheumatologist long before I was critical. Because of our personal connection, she would have taken my pain more seriously and treated me more aggressively before I lost the ability to walk without pain.
I might not have been facing the prospect of having to have my hip replaced in my thirties.
While Crohn’s is the more painful condition, and the one that affects me more obviously, it is my mobility impairment that disables me the most. It’s what keeps me from being able to explore my neighbourhood. It’s what prevents me from going to marches, or on long walks, or enjoying just browsing at stores. It’s what makes it impossible for me to ride a bike, to tie my shoelaces.
I can’t put on socks without twisting myself around in strange contortions. I can’t comfortably shave, or groom the toenails on my right foot. Just this week I managed to twist both my ankle and my knee attempting to treat a cut on my foot, since my damaged hip makes me have to warp my leg in odd ways to be able to reach my foot.
I can’t stand for long periods of time, even when I’m doing something I enjoy like cooking. My lower back starts to stiffen till I can’t move comfortably.
My leg makes me self-conscious, more so in many ways than my Crohn’s. It’s been a source of unimaginable pain and so much of my history with it as well as the accessibility measures for it are tied together with fat shaming and my own body image issues. It changed the course of my life in major permanent ways. Yes, many of those ways have been good. And yes, I don’t regret who I am, or what I do.
But knowing that doctor’s fear of menstruation, that doctor’s unwillingness to study it and learn about it and its physiological impacts is one of the reasons why I can’t walk? Knowing that this toxic masculinity bullshit and the unchecked patriarchy and misogyny in medicine is why I had to go through all that pain, needlessly. That’s devastating.