Chronic Illness & Queer Identity
Photo by Bret Kavanaugh on Unsplash
If you’re queer and living with a chronic illness, you may already know what it’s like to navigate a world that requires more time, energy, and advocacy in order to be heard.
When most people hear about chronic illness, they often think about the clinical side: medication. Pain. Symptoms.
The reality of chronic illness is rarely so narrow. Your body may be affected by a chronic illness, and be how you express yourself, and be what you experience the world through. It’s natural, then, for chronic illness, identity, and your relationship with your own body to become deeply tied to one another.
The way chronic illness and identity overlap is deeply personal and no two people’s experiences will look quite the same. However, there are some experiences at this intersection that you may see yourself in.
Chronic Illness & Your Queer Body
Your body, how it looks, and how it works, don’t define your gender. Your body can, though, be an important place in which you wish to express and connect with your gender identity. Even if you know that your body doesn’t determine your gender, it can be frustrating, painful, or confusing when your body’s needs or appearance interfere with the way you’d wish to express your gender.
Health concerns may impact how you’re able to safely bind. Some hormonal differences and medications can affect things such as facial hair, voice, weight distribution, muscle, and frequency of menstruation - all things that you may wish to incorporate into your gender expression. These effects can be very distressing when you don’t feel they match your gender. Or, it could even feel affirming. It can feel deeply confusing when your body and identity are starting to align, and your doctor’s health recommendations are to remove the very thing that was so affirming - as if your identity, body, and health are all at odds.
When caring for a body that already requires extra energy and accommodations in day to day life, having your gender expression impacted, too, can create a more profound feeling of frustration and loss.
Photo by Mehrab Sium on Unsplash
Healthcare & Queerness
Healthcare itself can be highly gendered. Gynecologic care is often found in “women’s health” clinics and care for some sexual dysfunctions and hormone imbalances is often found in “men’s health” clinics. Walking into a space that does not seem designed with you in mind can feel alienating and vulnerable before you even get to speak with your doctor. Uncertainty around whether you’ll be welcomed, misgendered, questioned, or need to correct others can make an already uncomfortable visit draining or even scary.
Some health concerns tend to affect a particular sex assigned at birth, like PMOS and endometriosis. For those who already may struggle with feelings of dysphoria or wish not to focus on their reproductive organs, frequent pain in these areas makes that very difficult. The last thing you may want to do is reach out to doctors for even more attention to parts of yourself that cause discomfort, especially when you may also have to explain your symptoms, and correct assumptions about yourself.
Many providers give care through a very cis heteronormative lens, making assumptions about your contraceptive needs and family planning. Needing to be your own advocate and routinely correct presumptions can be exhausting and nerve wracking, especially if you’re already uncomfortable with the treatment process or unfamiliar with your provider.
Finding a provider can be daunting all on its own. Needing someone knowledgeable and affirming narrows options, and it can still be hard to know who will feel safe until you are already in the room. Often, the queer chronic illness community relies on one another to locate providers who understand both.
What can be even more frustrating is that, even with a knowledgeable and affirming provider, there may not be enough information available to fully answer your questions. If you are trying to decide whether a treatment is a good fit while on HRT, or what preventive care recommendations apply to your body, you may find that there is less clear guidance than there should be.
Chronic Illness & Queer Community
Outside of the doctor’s office, chronic illness can make it more difficult to connect with your community. You may want to connect with your friends or attend community events, and instead need to cancel due to a bad pain day, limited mobility, or fatigue. Unpredictable flares make planning particularly challenging. It’s hard to get excited for an event when you can’t trust how your body will feel on the day of. Accommodations can help, and there may be other ways to get involved, but there still can be real grief in missing something you spent time looking forward to and not knowing whether you’ll be able to make it next time.
Chronic illness may also affect family planning, such as whether it is safe to donate gametes, carry a pregnancy, or continue certain medications during pregnancy. If you already have unique circumstances around growing your family, chronic illness can add a whole additional layer to consider.
All of this may leave you feeling uncertain, exhausted, frustrated, and alone in decisions that already feel complicated.
If navigating this feels lonely or overwhelming, you’re not being dramatic. You’re noticing the very real emotional toll of the world around you asking you to explain and justify too much.
Having layered needs does not make you a difficult patient. It does not make you a difficult person, and you are not asking too much by wanting care and support that believes you, and that sees your body, your identity, and the life that you’re building.