Happy National Coming Out Day to everyone, including those who are ‘out’ of the closet, those who are hoping to come out soon, those who are struggling with being in the closet, and our allies!
Did you know that only about 14% of HCPs talk to their patients about sexual health? 14%!! That number is low and can have an impact on the care that a patient living with Inflammatory Bowel Disease (IBD) receives, directly affecting our quality of life.
As IBD patient advocates, Madhura, who identifies as queer and asexual, and Tina, who is a staunch ally, we recognise the complexities of navigating chronic illness, sexual orientation and gender identity, and cultural norms and considerations while accessing healthcare.
Should I come out to my provider so I can discuss the interplay between IBD and my sexuality? Will I face discrimination? How do I manage the dual challenge of managing my IBD while navigating my sexuality or gender identity? Am I alone in my struggles, or are there other queer individuals living with IBD like me and will I find allies? These are all questions and challenges that queer individuals grapple with on a journey towards acceptance and carving out an equal place for ourselves in this world.
At SAIA, we are proud to collaborate with Pfizer on this list of strategies, suggestions, and resources for IBD patients who identify as members of the LGBTQIA+ community to navigate their healthcare, access education, and find support networks.
1. Find the right provider for you: We must feel comfortable and safe with our provider. This may require seeking multiple opinions, but it is possible to find a provider who is either a member of the LGBTQIA+ community or an empathetic ally across the globe. In India, our providers may also not be ‘out’ or may not have visible signs in their clinics, like rainbow flags or prominent displays of pronouns. Instead, it may help to look non-judgemental providers who demonstrate a willingness to engage with our concerns and respect our preferences. Even if you are comfortable with your provider, you do not need to come out to them until and unless you feel ready. For instance, even though Madhura’s GI has been a steadfast ally, she has not ‘come out’ to him, though she has discussed queer-focused preventative healthcare and her preference not to be married or start a family.
2. Knowledge is power: Educate yourself about IBD and specific considerations for queer IBD patients, including sexual health, gender-affirming medical and surgical interventions, and preventative care like vaccines and pre-exposure prophylaxis (PReP). This helps us advocate for ourselves effectively. Some resources include:
a. SAIA’s Patient Education Talk on LGBTQIA+ Intersectionality & talk on Pride in GI: SAIA has conducted two important talks addressing the intersectionality between cultural identity and living with IBD and the importance of navigating sexual orientation and gender identity while delivering and accessing healthcare for chronic GI conditions, including IBD, IBS, and colorectal cancer (CRC). These talks featured patient advocates and clinician experts who collaboratively identified challenges that patients faced while navigating cultural identities and expectations, and sexual orientation and gender identity. These talks sought to design solutions to support patients in clinic, and ensure our identity is treated with respect and we get the care we deserve.
b. Pfizer’s Inclusive Care in IBD Toolkit: designed in collaboration with patients and providers from the LGBTQIA+ community, the toolkit aims to address these needs and healthcare gaps, raise awareness within the community, and provide healthcare institutions, providers, and patients with opportunities to connect and encourage shared decision-making. To encourage these courageous conversations between patients and providers, the toolkit contains resources such as outlining SOGI definitions, guidance on sexual health in IBD, healthcare practices and considerations such as additional vaccinations that may be needed as part of an ongoing IBD healthcare plan, a guide for pediatric patients to advocate for their care as they transition to adult clinics. This toolkit is projected to launch throughout the US on National Coming Out Day, with a global launch in the near future. Please access patient resources through the QR codes below.
Other resources include:
a. Crohn’s & Colitis UK’s Resources on LGBTQIA+ Health with Crohn’s and Colitis
b. Global Healthy Living Foundation’s Creating Change for LGBTQIA+ IBD Patients
c. Pride and Poop, curated by Cass D Condray
d. Mayo Clinic’s IBD Pride Clinic
3. Seek community: Having an understanding community that treats our experience with respect and makes us feel welcome is key to building resilience as we navigate IBD and whatever our sexuality and gender identity may be. Some safe spaces include:
c. Crohn’s and Colitis Foundation’s Virtual Support Group for Gay/Bi Men and Women / NB Individuals
d. United Ostomy Associations of America’s GLO (Gay and Lesbian Ostomates) Network
4. Seeking mental health support: Navigating the intersectionality between IBD and sexual orientation/gender identity can be hard. Seeking mental health support can help us cope with this invisible psychosocial burden. Resources such as queer-friendly therapists include:
a. Mariwala Health Institute’s List (India)
d. Muslim Alliance for Sexual and Gender Diversity’s Resource (global resource for individuals of Muslim faith)
Navigating IBD as a member of the LGBTQIA+ community may feel daunting at times. But this National Coming Out Day, we are here to remind you that each of us deserves access to high-quality healthcare. We hope these resources help support you through your coming out journey and beyond.
This blog post has been sponsored by and co-created with Pfizer.
We are thankful to Dr. Sumit Bhatia, Dr. Neilanjan Nandi, and Smruti Govan for their feedback and helpful suggestions on this blog post.