How Does LGBTQ+ Identity Impact Healthcare Experiences?

Each June, Lesbian, Gay, Bisexual, Transgender, and Queer (LGBTQ+) Pride Month provides an opportunity to celebrate and honor the LGBTQ+ community and reflect on LGBTQ+ struggles for liberation and equity. Within the health sector, Pride Month also serves as an annual occasion to reflect on how LGBTQ+ identity can intersect with and impact healthcare experiences. We know, for example, that:  

• 16% of LGBTQ+ adults report having experienced discrimination at the doctor’s office or in another healthcare setting[i];
• A higher percentage of LGBTQ+ people report having an ongoing health condition, disability, or chronic disease than their non-LGBTQ+ counterparts[ii];
• LGBTQ+ people report struggling with health care costs at higher rates than non-LGBTQ+ people, including medical bills and other insurance costs[iii];
• More than one in six LGBTQ+ adults say that they have avoided seeking medical care at some point[iv]. Some fear discrimination, worry about being believed by a medical professional, or experience other challenges;
• Medical mistrust is more acute for transgender Americans, nearly one-quarter of whom report having avoided doctors or healthcare[v].

When it comes to sepsis, seeking care quickly, having symptoms taken seriously, and being addressed promptly by healthcare professionals is absolutely vital. For every hour treatment is delayed, there is a 4-9% increased chance of progression to septic shock. As many members of the Sepsis Alliance community can attest firsthand, avoiding or delaying care, or having a sepsis diagnosis missed for any reason, can threaten a limb or even a life. At the same time, individuals with certain health conditions or chronic diseases can be at higher risk of contracting infections, which in turn can increase the risk of sepsis (read more: “Sepsis And...” series).

While healthcare needs differ greatly across the diverse LGBTQ+ community, there is a shared need for culturally competent care – care that recognizes and meets the specific concerns of a patient group. There is also a need for care that is working to address barriers to access and eliminate discriminatory assumptions on the part of healthcare professionals. For sepsis care specifically, lessening medical mistrust and making health resources more accessible can serve as effective sepsis prevention and can facilitate better sepsis treatment in all communities.  

Sepsis Alliance invited LGBTQ+ members of our community to share their experiences interacting with the healthcare system, related to sepsis  and beyond. You can read excerpts of their stories below, in their own words.

 

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Kris Muñoz

Pronouns: he/him
Location: Fort Worth, Texas
Sepsis survivor 

“I remember the doctor coming in and casually saying: ‘your diagnosis is severe sepsis.’ I had never heard of that in my life. My first thought was: ‘okay, is there a pill for that?’ Finding out about recovery and treatment has been on and off. Only some doctors and medical professionals are aware of it. Recently, I saw a dermatologist – because when [my sepsis] happened, my face went tomato red, and it has stayed a degree of red ever since. I told this dermatologist this, and she was telling me that it was rosacea. And I was like, ‘no, you don’t understand. This didn’t happen before. I didn’t have this before, but now I do’.”  

“I’ve had good experiences with the health sector. I’ve had understanding experiences. But there have been times when I have disclosed [my LGBTQ+ identity] for medical purposes, and then it’s suddenly shifted to, oh, it must not be the post-sepsis syndrome, it has to be HIV-related… I’m HIV-negative. But once I bring that up, suddenly, it’s a shift.” 

“My recovery has been very frustrating. I’m still recovering. When this happened in 2014, I was a young man and I was training for a marathon. And after this happened, I had no energy. I still barely do. I had what some survivors call ‘brain fog’ – I had that for a good three years. I did not know of other people who had sepsis or had even heard of it, and so I started my own support group. Knowing I’m not alone, that there’s other people out there experiencing the same symptoms that I have … that’s what I desperately needed.” 

“One thing I’ve always said, as a person of the LGBTQ+ community, is that laws and protocols need to be updated and changed to reflect the times. As a gay man, donating blood is a no. Donating plasma is a maybe. Protocols, policies, laws need to be changed and updated.” 

“In terms of bedside manner, what I respond to most are the little dignities. Direct eye contact, people calling me my name. In those moments when I am uncomfortable, vulnerable, scared, frustrated, that sign of basic human respect matters to me. They are recognizing who I am – not as a patient file number, but as Kris, here, right now.” 

 

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Chloé West

Pronouns: she/her
Location: Forest Park, Illinois 

“The biggest thing that would affirm the LGBTQ+ community in healthcare is widespread resources accessible to people from a young age. Literature about safe sex, less taboo conversations about hormone treatments, gender neutral bathrooms, etc. We need to approach healthcare with more tolerance and education. It would be incredible to have queer-centric hospitals or clinics where people can walk in and see healthcare providers that look like them, value their values, teach them about their queer bodies in ways that straight providers can’t. I know I would be much more apt to visit a medical facility that valued my lifestyle. Being able to have meaningful, safe conversations about starting a family with my partner in a non-traditional way would be such a game changer.”

 

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Patrick Donovan

Pronouns: he/him
Location: Brooklyn, New York  

“My relationship to the health sector is currently good. I have a really good primary care doctor. I met her through a health center that focuses on LGBTQ+ health. But it definitely wasn’t always that way. While I was living in Maine, I was pursuing a diagnosis for Crohn’s disease – which I was pretty sure I had – and I was finding it near-impossible to have anyone respect what I was saying about my symptoms. I had notes in my file about being an ‘unreliable narrator,’ like I probably was just having stomach cramps, or I was exaggerating. Which was jarring. It’s definitely something that was a reaction to me being gay – all of a sudden, I was no longer reliable, which is something I imagine women face even worse. There’s a sense that you’re hysterical, your pain can’t be that bad.” 

“When it comes to how the health sector can do better – there are resources out there. Take a few notes! There are some doctors who just don’t care to learn, because they think it doesn’t affect them. They don’t think they have to educate themselves about the issues that affect a minority like us.”

 

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Lane Anthony Flores

Pronouns: he/him or they/them
Location: Chicago, Illinois
 

“In 2018, I was experiencing gut health issues. I visited a local doctor and was given common antibiotics to treat the issue. The doctor also demanded I do an HIV test, stressing that because of my history of queer sex, I was at a heightened risk. This was presented in a homophobic manner, but at the time I was scared enough by his demeanor to agree to the test, which came up negative, as I rationally knew it would. However, when I asked if I could get onto PrEP [a medication used to reduce chances of contracting HIV pre-exposure] after this episode, the doctor gave a long sigh and said that no, he couldn’t ‘just prescribe something like that.’ When I asked why, as it seemed a logical choice, he looked at me and said, and I quote, ‘because then you might start engaging in more risky practices, thinking that it was okay because you’re on PrEP.’ To be very clear, this was a general practitioner – my behavior was not up for his diagnosis. I have never used [that medical practice] since then, and now only ever see doctors who work with queer patients.” 

“The health sector can take behavior control out of the hands of doctors by ensuring a commitment to preventative care. It can engage and train more LGBTQ+ professionals in healthcare settings making decisions and calling shots, and ensure LQBTQ+ representation on the boards of hospitals and pharma companies. It can take an active role in destigmatizing ‘gay’ conditions, and work to ensure free care for basic needs – nutrition, sexual health, mental health. Impoverished LGBTQ+ populations are the ones suffering most.”

 

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Health sector organizations have an obligation to understand LGBTQ+ patient experiences, work to address barriers to care and biases, and facilitate high-quality care – during Pride Month, and all year round. For Sepsis Alliance, understanding the barriers and discrimination that may impact sepsis care for those in the LGBTQ+ community enables us to better educate and advocate. 

Sepsis Alliance is grateful to those who shared their experiences for this article, and all those who share their patient experiences in our Faces of Sepsis™ community. 

Learn more about Sepsis Alliance’s ongoing efforts to close inequitable gaps in sepsis incidence, treatment access, and patient outcomes here.

 

 

[i] [v] Discrimination in America: Experiences and Views of LGBTQ Americans. Nov. 2017, https://cdn1.sph.harvard.edu/wp-content/uploads/sites/94/2017/11/NPR-RWJF-HSPH-Discrimination-LGBTQ-Final-Report.pdf.

[ii] [iii] Lindsey Dawson Follow, Brittni Frederiksen. “LGBT+ People’s Health and Experiences Accessing Care – Report.” KFF, 18 Aug. 2021, https://www.kff.org/report-section/lgbt-peoples-health-and-experiences-accessing-care-report/#health-status

[iv] Casey LS, Reisner SL, Findling MG, Blendon RJ, Benson JM, Sayde JM, Miller C; “Discrimination in the United States: Experiences of Lesbian, Gay, Bisexual, Transgender, and Queer Americans.” Health Services Research, U.S. National Library of Medicine, 28 Oct. 2019. https://pubmed.ncbi.nlm.nih.gov/31659745/.