I felt as if there were parts of my disease that I had to keep to myself because no one would truly understand the daily struggles I would face.
Sharan
Living with Crohn's
I was diagnosed with Crohn’s in 2002, and my family have always been extremely supportive. However, it wasn’t until I made the decision to volunteer for Crohn’s & Colitis UK that I felt truly comfortable opening up about my personal experience with this condition.
My journey as a volunteer for the Berkshire Network started in January 2018 and, together as a team, we initiated monthly social events to provide those affected by Crohn’s or Colitis with a safe space to share personal experiences and hopefully learn from one another.
We realised quite quickly how valuable our social was becoming.
Opening up this space to people every month meant that they wouldn’t be waiting too long between each social if they were going through a difficult time.
Not only did we have people with Crohn’s or Colitis attend, but we also welcomed parents, caregivers, friends, and others who wanted to better understand this condition. They came so that they could support their loved ones in the best possible way.
Even as a volunteer myself, I found meeting and chatting with others affected by the conditions incredibly comforting.
We all had a shared understanding of how much this condition can affect our day to day lives and there was never any judgement passed from anyone.
A few people attending our social events had been living with this condition for years without speaking to anyone about it at all. These events allowed them to open up for the very first time and helped them realise that they were not alone in this.
Unfortunately, the pandemic meant putting our network events on hold.
We made sure we kept everyone updated via social media about any virtual social events and we directed anyone in need of support to Crohn’s & Colitis UK’s helpline.
For me personally, the absence of our monthly socials was difficult to process at first because it had become a safe space even for me. Knowing that I could easily open up about anything with this group without having to hear comments like “well it could be worse” or “just try to be positive” meant that I never had to keep any part of this disease to myself anymore.
These events are not intended to provide medical or professional advice, nor are they meant to act as support groups. However, they do provide a social setting in which people are welcome to open up as much or as little as they’d like.
We are still waiting for things to get back to how they were, but I’m really looking forward to being able to host these social events with my network again.
I’m glad that Crohn’s & Colitis UK could keep social events going virtually but being able to meet and connect with others proved to be incredibly valuable for so many who attended our events regularly.
Shared experience is so valuable when living with chronic illnesses like Crohn’s or Colitis and the events we host help connect people to others who have or are currently going through the same thing.
Due to the ongoing situation in the UK our Local Network events are not running at pre-pandemic frequency levels. However, do please check out your Local Network's page to see information about any upcoming events.
Our Virtual Social Events also offer a chance to chat, share experiences and potentially learn from others. You can attend any of these virtual events, no matter where in the UK you are based.
