As we commemorate Pride Month, Grace shares her personal perspective as an individual living with Marfan syndrome who is also part of the LGBTQ+ community.
My name is Grace Meyers. I am 20 years old and live in Southeast Michigan. I was diagnosed with Marfan syndrome when I was 4 years old. I came out as lesbian when I was 16 years old. These two major identities have shaped who I am and what I do.
Growing up disabled is tough. You’re viewed as different from everyone else, you feel like you don’t fit in, you’re insecure about yourself, and you wish you could change. Having a rare condition means that a lot of the time you know how these disorders affect you better than the doctors. Being a part of the LGBTQ+ community can also have those outlooks. Coming out and being out is scary yet rewarding.
This is your story. You are your own, unique person. Within the LGBTQ+ community, and especially with Marfan, EDS, LDS, and related conditions, there is a higher risk of [heart-related complications]. We have to pay more attention to our mental and physical healthcare.
Non-discriminatory policies within medical facilities can lead to increased understanding between patients and medical professionals, which provides more accurate and effective treatment. Healthcare workers can learn to recognize the connection of needs and access to care between being a part of the LGBTQ+ community and having Marfan, LDS, VEDS and related conditions. “Health care systems need to play a significant role – to enact policies to encourage and support researchers and health care professionals to ask these questions in a respectful manner and to implement structures that emphasize the clinical importance of understanding the many layers related to caring for people with a minority sexual orientation or gender identity.” (Caceres 2020).
I would like everyone struggling with accepting their identities to know that this is what you are meant to be, and you can use this to your advantage. I have gained a lot of support, skills, and opportunities throughout the Marfan and LGBTQ+ community. I use my experiences to help those alike realize their potential. Advocacy and speaking up for your needs can be difficult but life-changing/saving. The ability to know and learn your body and mind is an important trait to get the treatment you deserve. Know the signs, fight for victory.
Links Grace Referenced:
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.