Strength in Two Colors: LGBTQ+ Warriors Battling Autoimmunity

Hello Readers & WAAA Members!

We are already in late-June and want to jump into the month by celebrating pride and representing for all no matter who they love or how they identify.

It's an often-overlooked reality that a significant number of individuals within the LGBTQ+ community also live with autoimmune conditions.

Studies indicate that a notable percentage of LBGTQ+ individuals experience autoimmune disorders, however, due to a lack of funding & research few exact numbers exist.

So, to raise more awareness, I decided to interview two members of these intersecting communities to see what we can learn about this rarely discussed topic.

First & foremost, I want to thank Saramonét & Olive both autoimmune warriors for being vulnerable and sharing their LGBTQ+ & chronic illness experiences through a Q & A session virtually. I am grateful to always come across beautiful souls even through social media & through blogging. So thank you both for your time & energy to make this blog possible.

It's important to highlight the intersectionality of health and identity in their journeys to shed light on a topic that is rarely discussed. As we explore these intertwined questions and answers, we uncover stories of resilience, empowerment, and the quest for acceptance amidst health challenges from an already biased medical community.

For many, discovering and embracing their identity is a transformative experience. It's about honoring authenticity and finding community amidst societal norms. Olive, a North Carolina resident navigating life with POTS & HSD, shares their thoughts:

Q: How do you find balance between managing your health and engaging with your LGBTQ+ identity?

Olive: "It's difficult to engage with queer identity in the way that other people do. When you are chronically ill. We don't necessarily get to go to the same events.”

Anyone whose a member of the LGBTQ community knows that parties and fun are a large part of the culture. Speaking on this, Olive said,

“We don't necessarily have the energy for the nightlife, which is unfortunately where a lot of queer spaces are centered is at bars and clubs. House parties that people set up.”

Her advice to deal with this?

“I think you have to figure out what works for you and look into other things like LGBTQ+ choirs, book clubs, or knitting circles and activities that fit your chronically ill lifestyle."

Yet, the path to self-acceptance is not without hurdles. Discrimination, stigma, and misconceptions often accompany discussions around sexual orientation and autoimmune disorders in the medical field. Saramonèt (She/They), a Los Angeles autoimmune warrior & advocate sheds light on this dual challenge:

Q: What are some of the challenges you face, being within the LBGQT+ community & interacting with health care providers?

Saramonèt: "I just had a doctor’s appointment with a foot and ankle specialist this week and I was surprised as a new patient to be asked my pronouns and gender identification in the new patient forms. It felt nice and I could tell from the actual care I received that my doctor listened to me and wanted to help me the best way possible and to use all resources available for me."

" Where that is not always the case when being seen by healthcare professionals.”

“Typically I am left defeated and in tears at the end of a doctor’s appointment due to not feeling heard or fully understood or taken seriously. With my age and appearance, it would seem that nothing is wrong with me but that isn’t the case. I am in pain 24/7."

Olive: "It's very difficult to navigating finding providers that will respect an identity and give you good treatment. I have found that to get good treatment I've had to compromise my identity. When I go to see specialists I make myself look less queer. I am a she-her instead of a they/them. It's unfortunate because I'm doing this often. 

"It's not good for my internal self but I'm having to do it to get the proper care I need. A lot of people are not able to do that for whatever reason,” she said.

“Whether it's you know they're doing self-work in therapy or dysphoria and they shouldn't have to: to get the proper care that you need.”

To end this exchange, Olive told us she wanted to make her point very clear: “Being queer is just as much if not more- a barrier to care as being a woman with a chronic illness or a person with a health issue."

Despite these challenges, individuals like Olive and Saramonèt exemplify courage and resilience in embracing their true selves even while combating autoimmune conditions and trying to participate in pride events safely.

Q: In what ways do you think the LGBTQ+ community could be more inclusive or supportive of people with autoimmune conditions?

SaraMonèt: "I think the LGBTQ+ community could be more inclusive or supportive of people with autoimmune illnesses by holding events that don’t require so much energy… maybe yoga, stretching, and/or sound baths.”

Once again, the subject of partying in the community was brought into the mix:

“And maybe more sober events as alcohol can be very triggering or taxing on the bodies and minds of those with chronic illnesses."

Olive focused on how the LGBTQ+ community can work better with disability activists.

Olive: "Historically, disability advocacy has been left out of many advocacy spaces. In all honesty, I think a large part of the queer community could learn that intersectionalism benefits everybody.”

One sticking point between the two communities has been the aftermath of the COVID-19 pandemic. LGBTQ+ activists started off extremely vocal about the need to combat the spread of the virus and worked hand-in-hand with other groups.

That changed quickly. Once the country reopened in 2022, most of them returned to business as usual — leaving many disability advocates like Olive feeling abandoned.

“I think there is a significant queer population that has given up on masking. Particularly being in pride season right now. The lack of masks at events is detrimental to the chronically ill LGBTQ+ people showing up. That doesn't even touch on the fact that many queer events and queer spaces are not fully accessible."

To end the interview, I wanted to ask Olive one last question. Something that each of our readers can hopefully apply to their own lives regardless of their sexual orientation

Q: What advice would you give to someone who is both navigating a chronic illness and exploring their LGBTQ+ identity?

Olive: "Let yourself change. Identities are dynamic and you're already dealing with labels from your chronic illness. Don't feel the need to label yourself as a queer person immediately or as bi or lesbian. Unlike chronic illness, which hits you whenever it wants, coming out is absolutely at your own pace and at your own time and it doesn't matter if it takes you 2 months, 2 years, or two decades to figure out who you are."

“Do it on your terms”