Throughout most of my life, I’ve struggled with this feeling of the unknown.
At different points, I have wondered: What will my life look like, as a person with OI, in 10 years-time? Will I be able to go to university? Will I be able to have children? Will I be able to have a fulfilling life? Will my pain get worse? Will I ever have enough energy to manage?
Due to being the only person with OI in my family, these big questions used to sit in my heart with no place to go. And these are also feelings that are not easy to talk about. It can be hard to be vulnerable when a huge component of living with brittle bone syndrome, for me, is being resilient and having thick skin. It can also be hard to accept that there is not always an ‘easy fix’. To recognise that the answers are not always easy to find, or sometimes, even possible to know. But, as I sit here as a 30-year old woman, I realise that it is important to be able to speak my truth. And more than anything, it is important to have a safe space where I can talk about the unique set of experiences that come with living with OI.
It is sometimes difficult to find your community with a disability. Or at least, that was my difficulty when I reflect on my twenties. I often met other disabled people in waiting rooms at hospitals. Or formal settings where we might listen to doctors talk about advances in medicine and technology that can improve our lives. Which is fantastic, of course. And I still learn so much from attending the more formal events. But having a disability comes with so many more layers than just the medical issues. It’s also very much to do with making sense of life, and how to navigate it.
Sometimes, all I wanted were friends with OI to talk to about our lived experiences. I wanted to talk about the small, everyday things, like how do you balance a coffee cup on your lap when you’re pushing a wheelchair around without spilling the drink all over yourself? I’ve had many dresses ruined trying to do this. (The solution for my circumstances was quite simple: buy a cup holder that can be attached to my manual frame. But this might not work for everyone). Or, the bigger things, like how do you navigate the dating world? Are you open about your disability from the start on Tinder, or do you wait until you’ve gotten to know a person?
Many of the OI European Society’s run Youth Events and every year OIFE arrange European Youths to come together in one country. I have been fortunate enough to attend a few of these Youth events over the years. I’ve been to the fantastic BBS Youth event (VOICE) in Bristol and. I’ve travelled to Berlin, Holland, Bruges and just this summer, Jesolo, in Italy.
Aside from the lucky opportunities to travel, what I love about these events is the community. Each time I have attended, I have always felt as though I am looking into a mirror when I meet other young people who have OI. I see people who look like me, who have stories that resonate. With such a rare condition, this does not happen often, and I believe that these kinds of events are vital for confidence building, being independent, and supporting emotional well-being.
A memory that sticks with me was when I went to a Youth event in Holland. I got talking to others about a few issues that I was having with my wheelchair. I was finding it extremely difficult to push myself. I had been measured by specialists when I first purchased my Quickie Xenon, and I thought the main reason that I was finding it tough to propel forward was because I did not have the upper body strength to do it. It was through talking to other people who used wheelchairs and comparing how we were positioned that I realised that my frame was far too low. In fact, my elbows were touching my wheels. This kind of shared, community knowledge is not always easy to stumble across. Much of what I’ve learnt about OI over the years has come from, in the first most obvious instance, living this condition. But also, through anecdotes and speaking to others with OI at BBS VOICE events and the annual BBS conferences. A community is important for these very reasons, because Google doesn’t hold all the answers, especially when it comes to an incredibly rare medical condition! Instead, we need to help each other.
I now have friends with OI from all over Europe, from the UK, to Ireland, to Germany, Sweden, Denmark, Belgium, Holland, and beyond. Many of the friendships that I’ve made over the years have developed from attending Youth events and BBS conferences. Not only do these environments create the spaces needed to talk about deeply personal issues, it also seems to generate a shared sense of solidarity. After seeing my friends, I always feel revitalised and as though I can take on the world. Together, we can work through tackling discrimination, changing attitudes, and learning from one another.
I had a great time this summer in Italy eating pasta, soaking in the sun, and sharing stories with others. It was so lovely to see a range of ages at the event, attendees between 16- 35, at different life stages, with their own unique insights. We stayed at the Villagio al mare Marzotto, which was an impressively accessible resort with a pool and beach. There were plenty of accessible rooms, the grounds were flat, the beach had wooden cladding that led right down to the sea, and there were plenty of beach wheelchairs which meant that we could easily go into the water. While in Jesolo, we got to try out wheelchair dancing, something that I’ve always been interested in, but have never had an opportunity to do. While most could easily sign up to a salsa dancing class in their local area, wheelchair dancing is much more niche and not so easy to stumble across. Although I was absolutely terrible at it, I still had a tremendous amount of fun.
Finding your community is an individual experience that looks different to every person. I feel much more empowered and enlightened now that I have one.
For me, the OI community that I’ve found, in the UK and beyond, is the lighthouse that I need when the sea is dark and choppy.