When worlds collide - our Trustee and Fundraising Volunteer Susan shares her experiences of being part of the LGBTQ+ and MS communities.
Taking to the streets with Pride
My first Pride March was in NYC in the mid-80s. I was in university and nervous but very excited. Someone gave me a giant poster of lesbian novelist Radclyffe Hall to carry through the march. I had been given a copy of her book, The Well of Loneliness, the previous Christmas and she was an icon to me.
It felt so daring and bold to be marching with out and proud dykes – shirtless, pierced, tattooed and PROUD. As a recently out 19-year-old I was slightly terrified yet thrilled. In the following 30+ years I’ve been to numerous Pride marches, mostly in London.
Coming out as a lesbian to family
I came out to my parents inadvertently (Freud may think otherwise), and to say that they did not react well would be an understatement. I met my English partner shortly after coming out and my parents adjusted to it after a few years.
They redeemed their liberal credentials in full, especially when they backed our, finally legal, civil partnership 21 years later. Our daughter was their first granddaughter and she was, and continues to be, adored.
My third sector and family life
The proudest moment in my professional life was setting up and running an international health charity promoting sexual and reproductive health for 15 years. My proudest moment intellectually was getting my MSc in Charity Management (with distinction) in 2018.
But my proudest moment of all was giving birth to our much wanted and carefully planned daughter Lily 18 years ago. She’s a miracle and makes us proud every day.
Adjusting to life with MS
My MS took me by surprise just before celebrating my 40th birthday, when Lily was 3 years old. I knew nothing about it, other than it put my uncle in a wheelchair in his 30s and shortened his life by 20 years, at a time when there was practically nothing to be done to treat MS patients.
After living happily in denial for a few years, I finally started to talk about it more and reach out a bit. What brought me into the MS Society orbit was when I shadowed the charity's former Chief Executive Michelle Mitchell during my MSc course.
Two years later, and I’m involved in setting up a new support group in West Central London and started as a trustee earlier this year. It’s a great opportunity to contribute my charity experience and MS patient perspective.
My MS identity is growing every day, I’m truly out about it and living my best life.
Marching to our own beat
I’ve never had the chance to merge my LGBT world and my growing MS world until this Pride. When I heard the MS Society was marching with Pride I was (somewhat ridiculously) overcome with excitement and anticipation. I’ve marched with the Jewish Lesbian and Gay Group and Democrats Abroad multiples times in the past but this march will be very special to me.
I had assumed my marching days were over but the prospect of marching with people who understand why I get tired (or need the loo) and having other support now means it’s back in my future. I look forward to meeting other LGBTQ+ people who are also living with MS. It will be lovely to be marching proudly with my new tribe.
Raising awareness online
This year, Pride celebrations across the country are moving online - and you can join us! Add a frame to your Facebook or Twitter profile or a sticker to your Insta story today.
To add stickers to Instagram, first start a story by clicking the + on your profile pic then search MS Society to find our sticker.