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27 Parts of Being Chronically Ill and LGBTQIA+ People Wish Others Understood

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When you have a chronic illness or disability, physical symptoms are not the only challenge you have to contend with. People with health conditions are often marginalized and under-represented, with awareness and accessibility severely lacking in most spaces.

Identifying as LGBTQIA+ (or any non-mainstream sexual orientation or gender identity) can come with its own set of difficulties. Many LGBTQIA+ folks tend to be marginalized as well and may face discrimination, inequality or even violence.

There are countless ways each of these identities can individually affect a person’s life – but folks who are both chronically ill and LGBTQIA+ often face additional, unique challenges at the intersection of these identities. Maybe you’ve experienced “double” discrimination, where a person makes hurtful judgments about both your illness and your gender identity or sexual orientation. Perhaps you’ve had difficulty receiving proper medical treatment for your health condition(s) because of prejudice from medical professionals. Or maybe you’ve loved customizing your wheelchair with rainbow ribbons as a nod to your LGBTQIA+ identity!

Everyone’s experiences with these two identities may look different – especially since there is such a wide range of illnesses and a broad spectrum of gender and sexuality. Still, unless you have both a chronic illness and are part of the LGBTQIA+ community, you may not have considered the unique ways these folks are often left out of the conversation in both communities.

To promote a better understanding of what life is like at the intersection of these identities, we asked our Mighty community to share one thing they wish others understood about what it’s like to identify as LGBTQIA+ and live with chronic illness.

Your health, gender and sexuality are not the sole defining aspects of who you are as a human being, but they do often form a core part of your identity – an identity that deserves to be loved, respected and valued. If you are struggling with having a chronic illness, identifying as LGBTQIA+ or both, know you are absolutely not alone. Check out the experiences our community shared with us below, and let us know what you would add in the comments.

Here’s what our community shared with us:

1. ‘Just because I have a chronic illness does not mean I don’t want a partner.’

“I want people to understand that my illness is only one aspect of me. I work hard and try to not let it define me. Being gay is who I am. Just because I have a chronic illness does not mean I don’t want a partner/lover/bf/gf…(whatever) A lot of us just want to love and be loved in return, someone to spend their life with. Everyone has baggage, visible or not. As they say in ‘Rent,’ ‘I’m lookin’ for baggage that goes with mine!’” – Bill N.

2. ‘I’m so much more than these two labels.’

“I’m so much more than these two labels. I have other interests and dreams that are separate from my pain and sexuality.” – Juliann H.

3. ‘I feel like I can’t talk about my illness because I’m already trans.’

“I’m a transman living with chronic depression, anxiety, chronic pain and I have bowed legs. With bowed legs, my hips are more prominent which causes me major dysphoria. I also can’t do other things guys my age are doing, like going to the gym, hanging out with friends and lots of other things. I feel like I can’t talk about my illness because I’m already trans and don’t want to seem like a pity party. I don’t think I’ll ever truly love myself even once medically transitioning because I know I won’t be able to get the body I want because of pain.” – Michael B.

4. ‘I don’t have the energy to defend my queerness and my invisible illness in the same day.’

“Sometimes I have to pick my battles because I don’t have the energy to defend my queerness and my invisible illness in the same day. And when I find someone who understands one or the other I’m waiting for them to learn something new and decide I’m too much effort as a friend.” – almostactivist

5. ‘Just because I’m asexual and sick doesn’t mean I have a hormonal imbalance.’

“Just because I’m asexual and sick doesn’t mean I have a hormonal imbalance ‘causing me to not be attracted to people’… I was asexual before I got sick, explain that.” – Katie B.

6. ‘IBS doesn’t care what bathroom I use… Please let me release in peace.’

“IBS [irritable bowel syndrome] doesn’t care what bathroom I use. When I need to go, I need to go. And if there’s a line for the women’s, I’ll go to the mens// if there’s only one stall in the men’s then I’ll check the women’s. Please let me release in peace regardless of what you think my genitals look like.” – Rory E.

7. ‘You never get a day off from being the minority.’

“Even when you are with ‘your kind’ (LGBTQ+ or chronic illness community), you will still be seen as part of a minority for that other aspect… You never get a day off from being the minority.” – Anne D.

8. ‘It makes romantic relationships that much harder to find.’

It makes romantic relationships that much harder to find, let alone work through. I once had someone on a dating app ask me if being chronically ill meant ‘in a fun hip hop way, or a sad teen drama kinda way.’” – Caralee W.

9. ‘I’ve always been asexual… It is not a side effect of my illnesses or meds.’

I’ve always been asexual, i.e. having no sexual or romantic attraction to anyone. It is not a side effect of my illnesses or meds and certainly not a defect of character. I am fine with my singleness and want others to accept it too, just as I want them to accept my physical limitations. Don’t shame me for being different or try to get me to change. I’m content with my life and you should be too.” – Elli H.

10. ‘When I have to educate them about sexual orientation issues, too, it’s just too much.’

“I can deal with educating people about my chronic illness, but when I have to educate them about sexual orientation issues, too, it’s just too much.” – JM K.

11. ‘I don’t have to be one or the other on any given day.’

I don’t have to be one or the other on any given day. At Pride, in the hospital, and in everyday life I am both queer and chronically ill and that’s amazing! I shouldn’t have to choose between pieces of myself to keep you happy.” – Kechia B.

12. ‘I am genuinely attracted to both men and women, not just trying to add more fish to the sea.’

“The fact that I am bisexual is not me trying to make up for the fact that nobody wants to date me because of my illness. I am genuinely attracted to both men and women, not just trying to add more fish to the sea.” – Aspia S.

13. ‘Not every Pride is accessible.’

The discrimination can be really hard at times because of the stigma surrounding it. And unfortunately not every Pride is accessible; I went in my hometown this year and had to take my cane and I was surprised at not only how hard it was to get around, but that not one single person spoke to me or even looked me in the eye. There were others out there in canes and wheelchairs, though not many of us, and the looks I got from my own community were disheartening and I left pretty quickly after I showed up just out of being uncomfortable.” – Shandi C.C.

14. ‘We exist!’

We exist!!! We’re here, we’re queer, and we’re exhausted!!” – Chris C.O.

15. ‘Coming out always has its risks, but for people in my situation, it has a whole other level of danger.’

“Coming out is hard enough, especially when you live in a very conservative environment. But coming out in that environment while also being physically disabled and/or chronically ill is terrifying. I need other people just to survive, so revealing something about myself that may hurt my relationship with those people (my aid at school, my friends and my grandmother, for example) could also potentially hurt the level of care I receive. Coming out always has its risks, but for people in my situation, it has a whole other level of danger to consider.” – macwithamc

16. ‘I’m a lesbian not because I can’t have sex, but because I simply like gals!’

“I wish that people understood that I’m a lesbian not because I can’t have sex, but because I simply like gals!” – hanalikesbananas

17. ‘Finding someone who sees you for who you are … is deeply important.’

“It’s so important to find a partner who does not act burdened or held back by you and will support and understand you on both your good and bad days. It’s often more difficult to find a partner in the LGBTQI+ community because the (out) dating pool is smaller, so finding someone who sees you for who you are and refusing to settle with the first gay you stumble upon is deeply important.” – Julia W.

18. ‘If you’re trans and you have chronic illnesses… they can use that to deny you access to medical transition.’

“If you’re trans and you have chronic illnesses, especially if mental illness is involved in any way, they can use that to deny you access to medical transition.” – Shane P.

19. ‘Walking through a small town grocery store with a vogmask and a service dog and my very obviously trans self is like being a zoo animal.’

“Honestly, the fact that we’re also queer makes us 1000 times more likely to be labeled as ‘special snowflakes.’ I know most disabled people feel watched a lot but walking through a small town grocery store with a vogmask and a service dog and my very obviously trans self is like being a zoo animal.” – Charlie R.

20. ‘So many medical professionals treat me worse.’

It alienates us even further. There is the stigma of being sick plus the stigma of being not heterosexual. So many medical professionals treat me worse. They talk down to my wife.” – Acadia M.M.

21. ‘When you are gay and chronically ill that’s all people see.’

“When you are gay and chronically ill that’s all people see. Not necessarily in a bad way. Sometimes it’s all you see yourself, with all of the balance it takes. Seeing doctors all the time and having to re-come out every time. Having chest dysphoria during an echo. Not knowing if you would be able to defend yourself if those who are threatening you act on it. I’m trans and gay, and undiagnosed (still waiting for my specialist appointment) which means so many appointments.” – griffinbean

22. ‘It’s just the way I was made.’

“I’m not trying to make my life harder. It’s just the way I was made. Not looking to score as many diversity points as possible!” – Ellie M.

23. ‘My illness is invisible and so is my sexuality.’

My illness is invisible and so is my sexuality. I am a pan-demi cis woman with a rare invisible illness. I would want people to know that I am not visible the way others are. My identity and experiences are either partially or entirely lost from being represented in media, advertising, industries and my community. When I am represented in these areas, it is often poorly. I think this is probably a commonality for LGBTQIA+ individuals as well as those with chronic illnesses, but we aren’t confusing to people because our experience is wrong or invalid, we’re confusing to them because we’re made invisible; it’s by design…and it’s hard being invisible in two ways…it was hard when it was even just one. The repercussions, being misunderstood, are exhausting and most times I don’t have the energy for it.” – Vana E.R.

24. ‘The LGBT+ community needs to have a better understanding of what it means to be disabled.’

“Identities are so so so intersectional. The LGBT+ community needs to have a better understanding of what it means to be disabled and how to include disabled individuals. Pride needs to become accessible for all queer folks.” – Helperpup

25. ‘When I read things about infertility, the stories are very different than my experience as a queer person.’

“I found out at age 30 after abdominal surgery that I’m infertile due to endometriosis. When I read things about infertility, the stories are very different than my experience as a queer person. I assumed until age 30 that the reason I had never gotten pregnant is because I’ve only been with women. It never occurred to me that I might not be able to get pregnant if I wanted to. I had a grief process around this, but it was very different than a heterosexual couple trying and failing to get pregnant. It was largely internal and alone. People always assume that ‘of course’ I don’t have children because I’m a lesbian, and my grief was invisible. I have now come to a place of peace around it. I have a beloved 6-month-old niece/godchild and am happy to have a child in my life, and the fact that she didn’t come from my body doesn’t matter.” – Cat P.

26. ‘I’m still a person.’

“I’m trans and I have chronic pain. I find it hard to make friends because classmates don’t want to talk to me because they seem unsure of how. I’d like them to know that I have interests and hobbies like they do, that I’m still a person.” – Oliver B.

27. ‘It can take a lot of effort to learn to love yourself… But you deserve it.’

It can take a lot of effort to learn to love yourself… But you deserve it even if it doesn’t always feel like it.” – Kelliann G.

If you identify as LGBTQIA+ and live with chronic illness, you are not alone. Your experiences are valid, and our community is here for you. To read more about what it’s like to be both chronically ill and LGBTQIA+, check out the following stories from our Mighty community:

Getty Image by Polina Shubkina

Originally published: June 25, 2019
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