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Krupa - Information Feedback Volunteer

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"I wanted to give back to Crohn's & Colitis UK as it had become a great resource in the absence of being able to talk to those around me."

Krupa is 40 years old and currently a stay at home Mum to a 3 year old girl. Krupa has been living with Crohn’s since 2013, and for the past eight years has volunteered with Crohn’s & Colitis UK as an Information Feedback Volunteer.

I was diagnosed with Crohn’s in November 2013, aged 29. I didn’t share my diagnosis further than my immediate circle and even then, it came with an insistence that nothing had changed except I was on medication.

Looking back, this was probably because in South Asian culture, there is a stigma attached to being unwell. You’re seen as “damaged goods” and people start questioning your ability to get married, have children etc. My aunt has had ulcerative colitis and a stoma for years and we have never spoken openly about her experience.

In October 2016, my health got so bad that I ended up in hospital for a long period of time and had 2 lengthy surgeries. It was during this period of recovery that I decided to become a Reader Volunteer (now called Information Feedback Volunteer). I wanted to give back to Crohn’s & Colitis UK as it had become a great resource in the absence of being able to talk to those around me. 
“”

If you’re considering volunteering as an Information Feedback Volunteer, I would urge you to go for it. Whatever your background, age, experience, literacy level - you will add value because of who you are and your unique perspective.

Krupa

Information Feedback Volunteer

I was nervous as I had also just started a new job the week I was given my first resource to review and wasn’t sure if I’d be able to do it. However, I need not have worried - the team give you full flexibility. You can request more time to provide feedback or you can even opt out of reviewing resources. This comes in handy if you’re in the middle of a flare, fatigued, just not up to it or even if the topic is triggering for you. 
 
I have found the role extremely fulfilling and have been able to consider my South Asian heritage and the culture when giving feedback on how we might understand and interpret certain issues. I hope these information resources will help others in my position while we keep working on the stigma in communities. 

Want to volunteer with us?

Our Information Feedback Volunteers help produce our award-winning information. They provide feedback on drafts of our upcoming webpages, videos and infographics. Information Feedback Volunteers are a key part of our information production process and help make sure our information is relevant and easy to understand.

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Information Feedback Volunteer

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Helpline Service

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.

  • Providing details of other specialist organisations.

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