What Are Some Unique Challenges LGBT+ Spoonies Face?

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Spoonie: A term used to refer to someone with a chronic illness. It was coined by lupus blogger Christine Miserandino who explained her lack of energy using spoons.

As people, we aren’t one dimensional or flat. Not a single one of us is “just” a spoonie. We are mothers, fathers, husbands, wives, sisters, & brothers. We are accountants, doctors, dog walkers, volunteers, and students. We are black, white, Latinx, and Asian. We are also queer. When we belong to two or more different social groups this is known as intersectionality. Intersectionality can be defined as, “the interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group, regarded as creating overlapping and interdependent systems of discrimination or disadvantage.”

I am a white, cisgender woman. I identify as disabled. And, I identify as bisexual. But, I am married to another woman. So, many people perceive me to be a lesbian. What does this mean for me and other queer spoonies? What are some of the unique challenges we face because of our dual status?

One challenge I have faced as a queer spoonie is accessing appropriate medical care. Since I have Ehler-Danlos Syndrome it can prove extremely difficult to find both a knowledgable and compassionate doctor. Every time I start seeing a new provider I feel anxious wondering if s/he will listen to me or completely blow me off and disregard what I’m saying. I’ve had several times where doctors have made me cry from their callous remarks. On top of that, I feel the same anxiety many queer folks feel when we have to come out to a new person.

Before the ACA was passed there were no protections available to LGBT+ patients in the US. Even with the passage of the ACA, many states don’t have their own protection laws and frequently disregard the (in my opinion-weak) protections afforded by the federal law.

According to the American Center for Progress:

“Among lesbian, gay, bisexual, and queer (LGBQ) respondents who had visited a doctor or health care provider in the year before the survey:

  • 8 percent said that a doctor or other health care provider refused to see them because of their actual or perceived sexual orientation.
  • 6 percent said that a doctor or other health care provider refused to give them health care related to their actual or perceived sexual orientation.
  • 7 percent said that a doctor or other health care provider refused to recognize their family, including a child or a same-sex spouse or partner.
  • 9 percent said that a doctor or other health care provider used harsh or abusive language when treating them.
  • 7 percent said that they experienced unwanted physical contact from a doctor or other health care provider (such as fondling, sexual assault, or rape).”

The statistics are even worse for the trans and non-binary members of our community.

“Among transgender people who had visited a doctor or health care providers’ office in the past year:

  • 29 percent said a doctor or other health care provider refused to see them because of their actual or perceived gender identity.
  • 12 percent said a doctor or other health care provider refused to give them health care related to gender transition.
  • 23 percent said a doctor or other health care provider intentionally misgendered them or used the wrong name.
  • 21 percent said a doctor or other health care provider used harsh or abusive language when treating them.
  • 29 percent said that they experienced unwanted physical contact from a doctor or other health care provider (such as fondling, sexual assault, or rape).”

This additional anxiety may cause some LGBT+ spoonies to delay or stop seeking medical care which could result in poorer long term health compared to our straight, cisgender peers.

Another challenge many LGBT+ spoonies face is within our own families. Typically, when a person with a disability requires a caregiver a relative will assume the role. But, if this relative feels negatively about their identity this may delay the patient from coming out. This can lead to an increase in depression and anxiety. And, could cause the patient to delay important life events such as dating or marriage for fear of losing their caregiver or other family support.

Many queer folks may even face discrimination from within the LGBT+ community. There can be a lot of pressure to show up for pride events, protests, and other social gatherings. Those who are not able to participate may face inadvertent ostracization and feel lonely. From my own personal experience, I’ve endured negative attitudes because of my social anxiety, PTSD, and inability to stand for long periods. In the past, I have been accused of being a “lazy ally” or “unwilling to support the cause.” Most recently, I was at a protest and a woman mocked me for clinging on to my friend’s arm. I was horribly dizzy that day and already scared because I was in a crowd. But, she interpreted it as me being ashamed or being too cowardly about the potential legal repercussions.

Arguably, even worse is the poverty many find themselves unable to escape. According to Talk Poverty, “Disability is both a cause and consequence of poverty. It is a cause because it can lead to job loss and reduced earnings, barriers to education and skills development, significant additional expenses, and many other challenges that can lead to economic hardship. It is also a consequence because poverty can limit access to health care and preventive services, and increase the likelihood that a person lives and works in an environment that may adversely affect health.”

Statistics suggest that the poverty rate for working age people with a disability is 2.5 times higher than for their peers without a disability.

Similarly, LGB folks face higher levels of poverty, especially women and POC. According to the Williams Institue, “Twenty-four percent of lesbians and bisexual women are poor, compared with only 19% of heterosexual women.” And for people of color, “…African-American same-sex couples are significantly more likely to be poor than African-American married heterosexual counterparts and are roughly three times more likely to live in poverty than white same-sex couples.”

For those of us that are spoonies and LGBT+, we can face a lot of undue societal pressure when it comes to our bodies. We must deal with doctors who may or may not want to treat us, but who we need to continue living our healthiest lives. We must battle insurance companies for fair treatment even though we are a minority and can have very high medical costs. We may be exposed to people who view us as living a wrong lifestyle and who view our sexuality as a choice. The stress of being a spoonie is often compounded by the discrimination that LGBT+ people face.

There is no simple solution to any of these problems. But, there can be ways you can help! If you are able-bodied, heterosexual, or cisgender offer to accompany us to the doctor or drive us to pick up a prescription from the pharmacy. Research shows that patients have better health outcomes when family and friends are actively involved in our care. Educate yourselves about our conditions. Reach out periodically and see if we need anything. When we are reserving our spoons for work or family life it can relieve a huge amount of pressure to have a friend pick us up dinner, help us with a small chore, or even just calling to say hi. Sometimes, even offering a ride to a social outing can make the difference between us staying home or getting to see our friends. With work, time, and spreading awareness we can improve the quality of life for LGBT+ spoonies.

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