What Pride means to me: Chris’s story

I came out when I was at university in the early 80s. It was a lot different back then because society was far less tolerant. The HIV and AIDS epidemic hardened public opinion, and I lost several friends to it. Section 28, which banned authorities and schools from ‘promoting homosexuality’, was passed. I didn’t have a problem with coming out as gay, but society wasn’t very accepting at the time.

Then, in November 2021, I was diagnosed with Parkinson’s. I knew I had it for a while before I got my diagnosis and even before I started seeing the doctors. Because of other health conditions, I’d already gone through the trauma of retiring medically before my Parkinson’s diagnosis which meant that it didn’t hit me psychologically as much as I thought it would. 

A difficult diagnosis

It was difficult to get a diagnosis. We ended up going private. I was worried if I didn’t get seen early enough, symptoms would develop quicker and there'd be no way back. 

I felt really mixed about my diagnosis. I was relieved to finally know what it was, but the news wasn’t delivered sensitively. Most of the consultation was a blur. My mind was reeling. I came home and I just remember sitting on the stairs crying my eyes out saying "I don’t feel ready to die".

I know I have a near-normal life expectancy now, but nobody told me that. Nobody gave me any information and I didn’t know where to go, so I felt completely overwhelmed. 

However, after having a few language issues I was referred to Tower Hamlets Community Neuro team who put me in touch with some fantastic specialist teams. They’re absolutely lovely and nothing is too much trouble. It's made such a difference.

Confronting 'icky' subjects

Something having Parkinson’s and being part of the LGBT+ community has in common for me is that most people don’t want to talk about either of them. They’re both quite difficult, ‘icky’ things for people to talk about. People think they're being intrusive asking questions. They don't realise how helpful it can be to talk. 

And there are additional issues for people with Parkinson’s from the LGBT+ community we need to talk about more. For example, we’re more likely to be estranged from family, and a lot of the support online talks about leaning on your family. This can mean we feel less supported or more alienated.

Taking part in London Pride is about being visible

It’s crucial for people who feel able to be visible, like me, to be visible. We need to show people that it’s ok, there are other people like you. And I think it’s like a bandwagon, isn’t it? The more visible people are, the more people become visible. Then language and support become more inclusive.

I’ll be taking part in the London Pride parade this year with Parkinson’s UK. I want to show other people from the LGBT+ community who have Parkinson’s that they can get support and meet people in a similar situation to them. 

I started going to Pride in the 1980s. Back then it was very much a protest. Of course, we did have a party (one of the highlights was Divine going down the Thames singing "You Think You’re a Man") but it was more of a political statement.

You're not alone

It’s become a much bigger event now, and although it feels like more of a corporate event, I don’t have a problem with that. You need to draw people in, and have a fun celebration as well! It’s important to show that the LGBT+ community is as diverse as the rest of society, including the fact that some of us have Parkinson’s too! 

My hope is that a cure for Parkinson’s won’t be much longer. Until then, Pride is about more than rainbow flags. It’s about letting people from all walks of life know that there are others out there like them and there for them.