I do quite a bit of public speaking about life with IBD, stomas, jpouches and also self esteem and body confidence. I also volunteer with Crohns and Colitis UK and IA Support at events all over the UK. And the one thing that tends to be the same at these events is the lack of younger people attending and I think it is a real shame.
I understand that there is so much support online nowadays, and I also get that going to a support event in person can be a terrifying experience, but I do believe that person to person support, that real life connection is irreplaceable by chatting online.
When I had my first surgery and had my ostomy, it was suggested that I attended a Stoma Open Day at the local hospital to meet other local ostomates and see all the different products available to me. I went along and entered the room, so nervous that I was shaking. I nearly turned back a few times, the idea of going into a room of strangers was almost too much to bear.
I think I was the youngest person there by 20 years. That sucked.
As I walked around the stalls I was asked twice who I was with, the assumption being that I was there to support an older relative. It really dented my confidence and reasserted this awful feeling that I had an “old persons disease”.
It made me realise that it is a vicious circle. A younger person attends these events and feels out of place and so doesn’t return, meaning the next younger person who arrives feels exactly the same.
This is why I feel the need to speak out, make a call to arms, to ask all you younger folk (and by younger I mean under 50!) to try out an event local to you. It isn’t easy but I assure you that having attended many over the past two years, the feeling I walk away with after spending time with people who know exactly how you feel, after talking openly to people about things you may shy away from with your friends and family, that feeling is good. It’s inclusive, it’s helpful.
That feeling I had at the first event made me want to make things better for others. This blog, my talks, the things I discuss in the media is all part of a plan to raise awareness and make people be more understanding that chronic illness can strike at any age and that we need more support for all.
I will be at the Stoma Day this year as a volunteer for Crohns and Colitis UK South Yorkshire group, so if you are in the area, please come along, you are guaranteed to see at least one smily face and I would love to chat and help you make other connections. It is terribly advertised and so you may not even be aware of it.
It is on 5th October 2015 from 10am – 3pm at Hillsborough Arena in Sheffield and is organised by Sheffield Hospitals. If you have an ostomy and live in South Yorkshire, do consider coming along.
As I said I volunteer for the South Yorkshire group of Crohns and Colitis UK, we are a team of volunteers who offer support to sufferers and their families, do fundraising and generally getting the name of CCUK out there, especially in South Yorkshire. The team can take up as little or as much time as you’re able to, we’re grateful for any help. So if you feel like coming along, even just to see what we’re about, then we’d love to see you. We are having a meeting this Thursday 17th September in Sheffield, all are welcome if you are interested in helping out or hearing more. You can find the event here. We are ever so friendly and we are a laid back group so please think about getting involved.
I do a lot of this stuff because I really do care, I want to make a difference. I honestly believe that through speaking out and talking at events, we can help all others who follow in our path. What we go through as people with IBD is tough, we fight an illness that tries to ruin every part of our lives and the worst thing is the strangling silence that wraps itself around our throats and stops us speaking out. Meeting others who are going through the same thing makes life a little easier, it stops that feeling of isolation, of feeling of being alone.
So think about it, have a look at local events to you and consider attending just one. If we all do that, imagine the army of support we could create!
Helping others and helping yourself. Get involved.