Mardi Gras

Lau_EA_Aus

A dedicated space to celebrate and acknowledge Mardi Gras, providing LGBTIQA+ ME/CFS community members with a space to share more about their lived experiences and for allies to express their support.

#whatdoespridemeantome #emergeaustralia

Recently we reached out to some of the LGBTQIA+ identifying members of the ME/CFS community to share their lived experience with us.

Shining a light on the LGBTIQA+ voices within our ME/CFS community highlights how the freedom to participate in their LGBTIQA+ identity and community is shrouded with barriers and lack of recognition of those additional barriers.

Emerge Australia believes that every LGBTIQA+ member in the ME/CFS community should be able to have every part of their identity acknowledged, respected and celebrated.

During Mardi Gras, it is important to remember that pride is so much more than a parade and there is more than one way to celebrate your identity or show your allyship to the LGBTIQA+ community. Possible ways to celebrate include:

Commenting on this thread and sharing your lived experiences and for allies to express their support -

Connecting with other LGBTIQA people living with ME/CFS
Community led Facebook group: LGBTIQA Australians with ME/CFS - https://www.facebook.com/groups/2019372181636185/

Share this post with the #whatdoespridemeantome and #emergeaustralia

Support the LGBTIQA+ community by watching the parade on March 5th https://iview.abc.net.au/show/sydney-gay-and-lesbian-mardi-gras-2022

This is by no means an exhaustive list so please add additional ways to celebrate or acknowledge Mardi Gras/Pride in the comments below!

river

Recently we reached out to some of the LGBTQIA+ identifying members of the ME/CFS community to share their lived experience with us.

How/where did this outreach take place? I would have liked to be involved, but I don't think I heard about it.

I could say a lot on this topic but I'm just going to focus on the double difficulty of getting good healthcare as someone who is both trans and has ME/CFS.

By the time I came out as trans and started pursuing gender affirming medical care, I had already been ill with ME/CFS for several years and had a "team" of medical professionals who knew my medical history and who I trusted with my chronic illness stuff.

Having found doctors who were at least half decent, I was really scared to jeopardise that by revealing "controversial" information about myself, even when that information was relevant to my medical care.
I was already uncomfortable talking to my GP about sexual health because I could tell she was making assumptions about me and gaslighting me about my lived experience, so there was no way I could talk to her about even being bisexual, let alone trans.
Gender dysphoria is technically classified as a mental illness (not a classification I agree with) and I was worried that if my doctors knew I was trans they might decide that, since I had a "mental illness", my ME/CFS was also somehow attributable to mental instability, and psychosomatic in nature. Or they could just decide to stop treating me altogether.

And if that happened, I'd have no guarantee of finding new doctors who understand ME/CFS and could provide me with the support I need to survive. And the pool of doctors to choose from is much smaller once you narrow it down to actively LGBT-supportive ones.

I ended up having a separate, small team of doctors to manage my gender transition, who I didn't allow to have any communication with the rest of my medical team, for my own safety. I of course made sure that my "gender team" had all the information they needed to make safe informed medical decisions. But it was very stressful, and I wish I had just one doctor I could trust with anything and everything.

Honestly, I wish I had come out earlier so I could seek out LGBT-friendly doctors in the first place, because I've generally had better experiences of overall healthcare and disability acceptance with doctors who specifically work with the LGBT community. Unfortunately there are few clinics or individuals actively working in this space and those that are tend to be booked up and not taking new patients, due to extraordinarily high demand.

Lau_EA_Aus

@river Thank you for sharing your experience, this is such a valuable space for me to also learn more about issue that face the ME/CFS LGBTQIA+ community. Once again thank you for sharing.

emsarah

@river Thanks so much for sharing what you've been through. It's so important we hear about this.

Lau_EA_Aus

Words from our LGBTQIA+ identifying Emerge Australia community members.

Amy_Em_Aus

Hi @river, thank you so much for sharing your experience and for embracing this space which has been created The reach out happened via one of our amazing volunteers and we are so grateful for those who have been willing to share their experience with us and the broader community.