My Ulcerative Colitis Story

 

Hi, I’m Anisha (@zumbawithanisha) and I’ve lived with ulcerative colitis for over 13 years. I work in mental health and in my spare time I’m a health advocate and I’m an Inclusive Dance and Zumba instructor. 

 

I experienced my first symptoms in 2008 at the age of 24. I noticed blood in my stool so I went to the GP, which kick-started my journey of living with a chronic illness.

 

My diagnosis wasn’t straight-forward. Over two years I lost a lot of weight, struggled to eat, I was often in the toilet up to 20 times a day and doubled-over in pain, my sleep was affected and I felt constantly exhausted. I  was finally given an ‘official’ diagnosis in 2010 which brought with it relief and hope for the future. 

 

I’ve been on many medications over the years and it’s been a challenge to find what works for me as IBD is different for everyone. It took 10 years to find a medication that would keep me in remission. It’s been a tiring, frustrating journey but I’m hopeful for the future because there’s been so much progress in the years that I’ve been diagnosed in terms of the variety of medicines and support now available.

 

As a woman of South Asian descent, there’s particular stigma in South Asian communities around health conditions and disabilities, which can make living with IBD even more challenging. I’ve heard people in the community say that living with a chronic illness or disability means ‘you’ve done something bad in a previous life and it’s your karma’, implying that your illness is somehow your fault and that ‘you should pray more’. 

 

But I am more than just my condition. I love to dance and I love to travel. 

 

Why I Joined the IBD Patient Panel

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I joined the Royal London Patient Panel - so that our patient voices can be heard loud and strong, in order to improve services to better support us, and shape the future of healthcare by the people who use it, so we can live the life we want.