Like many of us throughout 2020 and into this year, our Local Networks have been severely impacted by the pandemic but our virtual social events have helped keep us connected at such a difficult time.
Our volunteer Sharan explains the importance of local networks to the Crohn's and Colitis community, and why she can't wait to get back to physical socials as soon as it's safe to do so.
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.
For me personally, the social events 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.
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.
Volunteering is a great way to meet new people, develop new skills and make a difference to everyone affected by Crohn's and Colitis.
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We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.
Our helpline team can help by:
Providing information about Crohn’s and Colitis.
Listening and talking through your situation.
Helping you to find support from others in the Crohn’s and Colitis community.
Signposting you to specialist organisations.
Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.
Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).
If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.
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