Chronic Illness Affects Members of the LGBTQ Community Disproportionately

A study conducted by the University of Washington found that older LGBTQ women were more likely than heterosexual older women to suffer chronic health conditions (chronic illness among them), experience sleep problems, and drink excessively.

Fredriksen-Goldsen, the principal investigator on Aging with Pride, pointed out that there’s a misconception that gay and bisexual men would have more adverse health effects due to HIV risk—but that in fact, lesbian and bisexual women are considered less often when it comes to health interventions and tend to be more invisible. She said that they as a population are not getting the attention they deserve.

Kate Sanger of Jo’s Cervical Trust also highlights how various myths further stand in the way of LGBTQ patients receiving the care they need: “Smear tests, for example, are sometimes denied to patients on the assumption that they are not at risk of contracting HPV (a sexually transmitted virus which can develop into cervical abnormalities, leading to cervical cancer).”

She explains that the test is “relevant to any person with a cervix who has had any sexual contact with anyone, regardless of sexuality or gender.”

Queer women are also more likely than gay men to suffer from autoimmune disease—which, according to Maison Vie New Orleans, are “a diverse group of illnesses that share one key feature–The body views part of itself as a foreign substance and launches an attack on this tissue or organ. Cells within the body’s immune system, which are designed to protect the body from bacteria and viruses, carry out the attack.”

The road to clearcut answers when it comes to diagnosing these illnesses often isn’t easy or straightforward. Forty-five percent of women (who make up 75-80 percent of autoimmune disease sufferers) are dismissed as hypochondriacs when they first tell doctors about their symptoms. Patients report it takes an average of five doctors and 3.5 years to finally receive a diagnosis.

And yet rates are steadily rising—higher in the U.S. than in any other country.

What’s Contributing?

One theory for their increased incidence is that they are a byproduct of modern living. A 2020 study found that since 1991, the levels of ANA antibodies (common biomarkers of autoimmunity) on tests have risen significantly. 

“Because, by and large, humans’ genetic material hasn’t changed in a generation, scientists attribute the dramatic rise to changes in environment or lifestyle, including diet and its effect on the microbiome,” writes Meghan O’Rourke, author of The Invisible Kingdom: Rimagining Chronic Illness. 

Additionally, according to Chiropractic Economics, “Trauma or intense stress may up your odds of developing an autoimmune disease, a new study suggests. Comparing more than 106,000 people who had stress disorders with more than 1 million people without them, researchers found that stress was tied to a 36 percent greater risk of developing 41 autoimmune diseases, including rheumatoid arthritis, psoriasis, Crohn’s disease, and celiac disease.

“If you are a woman, every ACE point raises your chance of being hospitalized with an autoimmune disease such as hyperthyroidism, lupus, fibromyalgia, rheumatoid arthritis, Crohn’s disease, or celiac disease, by 20%. For men, your risk increases by 10% for every ACE point.” 

The stress that comes from being discriminated against or victimized as an LGBTQ person can be among the many that add to this overall toll. The body keeps the score, as Bessel van Der Kolk put it.

The multifactorial nature of these illness’ causes means that curing them won’t be a quick fix, either. Popping a pill won’t rid your body of years of accumulated offenders— because no single one of them is responsible. This makes the burden of care complex and ongoing. The minimal collective understanding and public reckoning of illness and injury that don’t adhere to a tidy before and after narrative also accounts for the dearth of support.

O’Rourke touches upon this in her book: “We are bad at recognizing the suffering of others unless we are given clearcut clues and evidence. And so invisible illnesses often go unacknowledged, while less serious conditions get attention.”

The Importance of Patient Self-Advocacy

That many autoimmune conditions don’t show up on routine blood tests means patients have to specifically ask for them—But many don’t, perhaps not even realizing they need to. If the symptoms don’t interfere with daily life, some may minimize them or downplay their potential deeper meaning.

It took a close family member of mine years to find a diagnosis for her condition. Before pursuing the alternative medicine route, she dealt with many doctors who dismissed her symptoms or implied they were psychosomatic. This, together with my own experience with years long undiagnosed Celiac disease, taught me the importance of perseverance and self-advocacy when it comes to personal health.

Through it, I want to encourage others to take charge of their own. Listen to your body, and if anything feels off or out of the norm for you, take note. Advocate for yourself, and push for tests, even in the face of initial dismissal.

Adequate care and responsiveness when it comes to your health are rights, not privileges—So know that even if it might feel this way, you are never a burden or a nuisance for demanding them.