Attending BBS Conference
2018 marks ten years since I started to attend the Brittle Bone Society conferences, I remember how apprehensive I felt in 2008 walking into the hotel in Dundee, not knowing what to expect. Up until this point, I had only known one other person with OI. And now I was about to spend a whole weekend with a group of strangers, with OI being the only thing we all had in common.
Little did I know that 10 years on I would have found one of my best friends through the Brittle Bone Society and travelled halfway across the world with her, help run the Birmingham Support Group and as of this year, start blogging!
One of the things I appreciate the most from being a member of the society is the understanding between everyone. You know, the little things that you don’t have to explain during a conversation, that you would have to explain to a non OI’er – it’s just priceless!
Even when I didn’t know what I missing out on by not being involved with the Brittle Bone Society, if I never made that decision to get involved, it means I would have never met the amazing network of friends and invaluable support that has now become like family over the years. I really do have a fantastic support network of family and friends, but some of the most comforting and reasuring conversations have come from my friends with OI themselves.
Shining a Light on Disability and Loneliness
That’s why shining a light on disability and loneliness is so important. It’s an issue that many people find difficult to talk about. But, ironically, allowing others to see our vulnerability can be the root to finding deeper connections with others.
We all know, or have experienced how poor access to services, inaccessible transport, buildings and homes, poor employment opportunities and financial challenges contribute to loneliness and social isolation. However, living with a rare genetic condition can also contribute to this. Many campaigns around loneliness often focusing on elderly people, but one in two (53%) of disabled people regularly experience loneliness too.
How society chooses to respond can help either fix it or compound it. Acknowledging that this actually matters is perhaps the first place to start to combat this. Secondly, I feel loneliness needs to be acted upon as a public health priority at all levels as well as increasing the awareness of different conditions, and dispelling misconceptions about disability are major steps in combatting the ‘silent epidemic’ of loneliness and isolation.
Shani is an award-winning international event manager, global voyager, disability campaigner and speaker. Raising awareness about disability and diversity is Shani’s passion. In August 2017, Shani founded the Diversability Card, the UK’s official discount card for people with disabilities. She is now working with Virgin Media to help them achieve their disability ambitions for customers and employees alike.
I write to you from what feels like the centre of the storm, that is my mental health.
It is an interesting thing to talk about, or to write about even. The effect of mental health is not something people can see when they look at me. You can see my wheelchair, my crutches, the waddle in my walk. It is easier to understand the presence of a physical limitation, but we are often quick to judge when people distance themselves from us, swerve social gatherings, do not reply to messages etc.
When you look at me you will not see a lifetime of depression and anxiety, that is because it is only now that I have had the vocabulary to identify these thoughts and feelings.
The last 16 months as we have all been locked down, I have been able to sit in my thoughts, and work through different stages of my life, to the point where I’ve been able to get comfortable with the uncomfortable reality of some of my life experiences.
Through all the trauma I have experienced, now I am understanding the effects these have had on me. There is always a reason for why we think the way we do, why certain things make us anxious, certain behaviours and habits we have etc. It is a fascinating process to try and understand your past and present self.
To give you some perspective on me personally, here is a list of 10 things I experience when my mental health is poor;
- Feeling hypersensitive and overstimulated
- Socially withdrawn
- Obsessive behaviours
- Inability to meet deadlines
- Poor and little sleep
- Poor communication
- Panic attacks
- Getting distracted/lost in unhealthy habits
Of course, there is much more to be said about how poor mental health manifests, but I am working with a word count here! I just wanted to share with you some things that I find difficult, because maybe these are things that you struggle with too. You are not alone.
What I have found to alleviate my anxiety is to have as much structure as possible and to fill each day with a handful of achievable goals and good habits. For me this looks like; making the bed when I get up in the morning, eating 3 meals a day, doing the washing up, going outside, doing some physical exercise etc. I also consider myself to be quite a creative person, so I find colouring really grounding, and journaling my thoughts and feelings has been a good way to unravel all these feelings too.
Something I would like to share is that I have recently re-embarked on my own recovery journey, starting a new (to me) type of psychotherapy. It is early days but I am going into it knowing I’m ready to create space for the things that have weighed me down. There are things I know I need time to explore. Some things I know I need closure on and others I would like to be able to turn into bigger conversations one day, when I am ready.
For now, take care. Be kind to yourself and others. Today is a new day…
Steven shares his experiences living with OI, and touches on mental health:
“My name is Steven and I have lived in Balloch Loch Lomond all my life. I was 36 the last time I Checked! I have been making cards for many years and enjoy chatting to people. I enjoy watching TV and going to the cinema. I also happen to have Osteogenesis Imperfecta (OI) or Brittle Bones. I use a powered wheelchair as I am unable to walk.
I have felt down a lot over the years since I was about 12 when there were a few changes, like high school and wanting more independence. I’d been to speak to people over the years but felt better about myself after 2012 when I attended a weekend away for young people, ran by The BBS called VOICE. I then signed up to an extras agency and I was in the Scottish Soap River City. I also began to meet more people with OI and keep in contact threw Facebook.
Volunteering at my local Citizens Advice Bureau for many years was great although at times I was unsure about what else I wanted to do. In 2016 I stopped going as I didn’t feel like doing much. I started staying at home a lot and I struggled to feel content even in my house, at times I wanted to go out but felt unable to face it. I was getting support from carers to take me out but a lot of the time I didn’t feel like it, so we’d just stay in.
In late 2016 I contacted a local Mental Health Organisation in my area called Stepping Stones. At first, I wasn’t sure but knew something needed to change. I joined one of their Local Social groups which is great. I am now learning how to paint at an Art Class, I have learned more about card making as I attend a card making club. I go to Tai Chi, a Folk Club and returned to the Citizens Advice Bureau.
Since attending more things, I have made a few friends and my life is a bit more fun and interesting. I have been getting on better with my Mum & Dad and other family who have always tried to support me.
Keeping Positive is not always easy but I try. If you ever feel low or need help always remember It’s good to talk as the BT Adverts used to say.”