This post is for the October Carnival of Aces, which is on the topic of disability.
Author’s note: This post is about a chronic condition I have that is treated with medication. I am able-bodied as long as I maintain ongoing medical treatment. I am writing about it for this carnival because people sometimes try to invalidate asexuality by saying things like, “You should get your hormone levels checked.”
I have a condition called Hashimoto’s hypothyroidism. The thyroid is a gland located in the throat that produces two related hormones (T3 and T4) which regulate how the body uses energy. Hypothyroidism is a condition that results from an underactive thyroid, that is, the thyroid does not produce sufficient T3 and/or T4 for the body’s needs. Hashimoto’s disease is an auto-immune disease in which the body’s immune system attacks and damages the thyroid, causing hypothyroidism. The auto-immune response may become quiescent after this time, but the hypothyroidism it causes remains as a chronic, lifelong condition. Like many other autoimmune diseases, Hashimoto’s disease is significantly more common in cis women than in cis men and commonly occurs during times when cis women experience significant overall hormonal changes, including puberty, pregnancy, and menopause.
Untreated hypothyroidism can have a wide range of effects, including chronic fatigue, weight gain, problems regulating body temperature (always feeling cold), and depression. Severe hypothyroidism can cause heart problems and in rare cases a type of coma called myxedema.This range of symptoms is because the thyroid mediates the body’s metabolism and use of energy on an ongoing basis. Thyroid hormones also affect the body’s response to other hormones including the sex hormones. In cis women, hypothyroidism can cause menstrual irregularity and complications during pregnancy. If Hashimoto’s disease occurs during gestation or puberty, there can be significant effects on growth and development. Hypothyroidism can be treated by a form of hormone replacement therapy, typically the use of synthetic thyroxine (T4).
I developed Hashimoto’s hypothyroidism around age 12. I had just started getting my period, then it stopped again. Over the following months, I experienced other symptoms including weight gain, lethargy, dry skin, and puffiness of the face. At first when I talked to my doctor, they didn’t think there was an underlying issue. This is unfortunately common with auto-immune diseases and I personally believe that the fact that these diseases more commonly affect cis women is part of why our male-dominated medical system tends to disregard and even invalidate them. My mom was extremely concerned about me and kept pushing the doctor to check for underlying causes until finally, after doing a number of hormone tests, they discovered that my thyroid was all but inactive. Thankfully, once I began taking synthetic thyroxine, my symptoms gradually disappeared and after several months I began getting my period again. Compared to the height I had been projected to achieve, it appears that my hypothyroidism caused me to lose out on one to two inches of growth. I was never going to be very tall, but this is part of why I’m very short (5’1”).
I have been taking synthetic thyroxine for some 27 years now, and will need to take it all my life. I see my doctor at least once a year just for the purpose of checking on my status and have to blood work done to make sure that my thyroid levels are within the normal range. It’s not unusual for them to adjust my dosage slightly if I go out of range. I am incredibly fortunate that none of this is very expensive because it is absolutely necessary to the functioning of my body and to my well-being.
So what does all of this have to do with asexuality? Nothing, actually. Although decreased sex drive may be a complication of hypothyroidism in some cases, asexuality is not about low sex drive! Sex drive and sexual attraction are two separate things. Some asexuals have low arousability (1, 2) as well as lack of sexual attraction, and I appear to be one of them, but if this was caused by atypical hormone levels, it would have been fixed once I started taking synthetic thyroxine, because all the other effects of atypical hormone levels were fixed then. If someone said to me, “You should get your hormones checked,” in regard to my asexuality, I could truthfully say to them, “I get them checked every year and I know they’re normal.”
Because my hypothyroidism started when I had just begun puberty, my sexuality never came into it. However, some people may discover their hypothyroidism later during adolescence and be asked about their sex drive during the process of diagnosis. This could potentially lead to medical or psychiatric invalidation of their asexuality, misdiagnosis as hypoactive sexual desire disorder, or putting them into treatment they don’t need.
Don’t think this is a real concern? It is. Last year, I talked on Tumblr with an ace who has recently been diagnosed with Hashimoto’s hypothyroidism and who was experiencing several of the above issues in dealing with her gynecologist. It is critically important for medical professionals to be aware of asexuality, to understand how it works, and to know what it is and is not. When asexuals are afraid to talk to their doctor about other serious health issues they may have, such as hypothyroidism, because they fear medical invalidation of their asexuality, this is a real problem.
As a final comment, hypothyroidism isn’t what we typically think of as a disability, even though it can have significant effects on mental and physical functioning if untreated. And unlike with many other kinds of disability, there isn’t a stereotype about people with hypothyroidism being non-sexual. Instead, it’s an unusual situation where the condition itself could be mistakenly taken as a “cause” for asexuality. I hope that this post adds something to the larger discussion about intersections of asexuality with disability, and that by sharing my story I might be able to help anybody who is concerned about medical invalidation of their asexuality while seeking treatment for hypothyroidism.