Shani’s Story – Loneliness


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.





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