I joined my first IBD online support group in September 2015. I had been struggling for a while with my mental health and had just made the big step of opening up to my rheumatology nurse about how I was feeling.
I had been diagnosed with Crohns Disease almost three years previously but still didn’t know much about it. After starting to open up, I knew one of the steps that would help would be to learn more about my illness.
After a quick search on Facebook I found the CCUK charity page and support group. The group was full of people with Crohns Disease and Ulcerative Colitis, people who had gone through surgery, people with Ostomies and more. Within a few days I had joined another couple of groups and began talking to some people. I read alot of posts and started to learn more about Crohns Disease. At times the information and people’s stories seemed scary. But what I noticed most was the still positive nature of so many people going through some of the hardest times and the sense of community.
I learnt about things the doctors should have told me when I was diagnosed. I was told I had Crohns Disease and pretty much sent on my way. I have also learnt a lot that the doctor’s don’t tell you!
Talking to people with the same illness as me was amazing – they knew exactly what I was going through and how I was feeling. I also loved seeing the ‘ordinary’ day to day photos and posts about people’s lives. It helped me remember that whatever was going on, I was still a person too. My illnesses are only part of my life and do not define me as a person.
I have had some great opportunities including setting up my blog and being invited to be part of The IBD & Ostomy Support Show. The community has been amazingly supportive and lovely and I can’t thank them enough for reading and sharing my blog and the lovely comments and messages I receive.
I have also been lucky enough to make some of the most amazing friends. Some of these people have supported me during the most difficult times of my life – hospitalisations, my marriage breakdown and my stoma surgery. I couldn’t imagine where I would be without them, which sounds cheesy, but they have become like family.
Some of us were able to meet up at the GYBO Ball at the weekend. We have done weekends away, nights out, charity events and stayed at each others houses. We live in all different areas of the country and don’t get to see each other as often as we would like but I know whenever I need something, these people are only a call or message away.
And finally (now time for the soppy part), I’ve met the most amazing man. After starting chatting due to a mutual friend from the groups we became friends. Things progressed and we decided to meet up. Since then, despite our health problems, he has been my little bit of fairytale. Eight months on from that first meet up and I’m happier and more in love than I could have ever imagined. I’m definitely a very lucky girl!
The online forums have their faults. There are trolls, people can be mean, ill informed and some people aren’t who they pretend to be. Overall though, I hope my experience shows that the positives can outweigh the negatives. Depression and anxiety is common when you suffer from IBD. This can make it difficult but I would honestly say if you get the chance to attend a meet you will not regret it!
Check out this great post from Counting My Spoons who writes about ‘The Importance Of Support Groups’