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Accessing quality, respectful healthcare has historically been challenging for individuals identifying as LGBTQ+. When you also have MS, finding the right care team becomes crucial for effective treatment. The LGBTQ+ community encounters unique challenges in managing MS, but there are ways to navigate through them.
Living with MS in the LGBTQ+ Community
When you live with multiple sclerosis (MS), it may already feel tough to relate to people who don't have the condition. According to the National Multiple Sclerosis Society (NMSS), about 1 million people in the United States have MS, less than 1 percent of the population. But when you are also lesbian, gay, bisexual, transgender, queer/questioning, or a like identity, such as intersex or asexual (LGBTQ+), it may feel even harder. People who are LGBTQ+ have historically been treated poorly in the healthcare system, but there are ways to advocate for yourself and get respectful, quality care as someone who is LGBTQ+ and has MS.
It's important to remember that having MS while being a part of the LGBTQ+ community can make you more susceptible to mental health issues. Fifty percent of people with MS will experience depression at least once in their lifetime, while about one-third will be diagnosed with an anxiety disorder. The unpredictable nature of the disease and its life-altering symptoms can significantly impact someone's sense of self.
Finding where you belong as an LGBTQ+ Member with MS
It's important to note that your sexual well-being can have a significant impact on your overall health. Research shows that LGBTQ+ individuals generally experience worse mental and physical health outcomes compared to their cisgender heterosexual counterparts, due to minority stress and a higher number of adverse childhood experiences (ACE).
When you have multiple sclerosis and identify as LGBTQ+, it can be challenging to find where you belong. Individuals with intersecting marginalized identities, such as those with disabilities and in the LGBTQ+ community, may struggle to see themselves represented in their communities.
Additionally, MS symptoms can make it more challenging to socialize and date. Research indicates that LGBTQ+ individuals with MS tend to participate less in activities within the LGBTQ+ community after being diagnosed, potentially leading to feelings of isolation.
Challenges for LGBTQ+ individuals in the Healthcare System
A study published in October 2021 in the Journal Multiple Sclerosis and Related Disorders found that individuals who identify as sexual or gender minorities and have multiple sclerosis face distinct challenges when trying to access quality medical care. These challenges stem from factors such as social discrimination, homophobia, and transphobia, and a lack of healthcare providers who are culturally competent in addressing the needs of LGBTQ+ individuals. Despite the protections provided by the Affordable Care Act, which prohibits discrimination based on sexual orientation and gender identity, many LGBTQ+ people still encounter discrimination in healthcare settings.
Nearly one-sixth of LGBTQ+ adults have experienced discrimination at their doctor's office or in other healthcare settings. Sadly, one-fifth of LGBTQ+ respondents stated that they have avoided seeking medical care due to fear of discrimination. LGBTQ+ individuals also face discrimination in their daily lives, which can negatively affect their health. Furthermore, there is a lack of clinical research in MS that explores the unique experiences of LGBTQ+ individuals. As a result, healthcare providers may not be fully equipped to understand the specific needs of LGBTQ+ individuals.
Listed below are ways in which LGBTQ+ individuals can advocate for themselves and access timely, respectful care for their MS:
1. Find a multiple sclerosis doctor you feel comfortable with. It's essential for queer individuals to feel at ease with their healthcare professionals. Trust and comfort with the practitioner is crucial for receiving the best care. Working with a neurologist specializing in MS, rather than a general neurologist, is also essential.
2. Identify a person on your healthcare team whom you trust completely. It can be exhausting to constantly educate others about the experience of being LGBTQ+ and living with a chronic illness or disability. Sometimes, a mental health provider, a physical therapist, or a nurse can be the person on your team you trust. Rely on these trusted providers to help you advocate for your needs and navigate the complexities of the healthcare system.
3. Speak up at your healthcare visits. Your healthcare providers may want to help you feel more comfortable, but you might need to learn how. If it feels safe, provide feedback at your appointments, if you notice something that can be changed to make you feel like your experiences and identity are valued. This could be as simple as changing clinic forms to reflect all gender identities.
4. Maintain your support system. It's essential to stay connected to your family and friends, even if they don't fully understand what you're going through. Queer individuals with MS should make sure they don't become isolated. Peer, community, and familial support are critical protective factors against minority stress.
5. Find your people. There are other LGBTQ+ individuals with MS out there. Some regional groups meet in person, while others may be found through online support groups. For example, you can share your story on social media to connect with others and explore resources beyond the National Multiple Sclerosis Society (NMSS).
6. Be proud of who you are. Don't stop advocating for yourself. Raise awareness about MS and the different kinds of people who live with it, including those who identify as LGBTQ+.
Robert Stroebel
Thought Leader and Disruptor
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