Henry was frustrated by the lack of relevant information for people living with chronic illnesses such as Crohn's and Colitis. He told us about his experience and how we helped to provide him with the answers he needed.
The coronavirus outbreak has been in the back of all our minds since before Christmas, a shadow growing ever closer as the months rolled on. This unprecedented and invisible threat has transformed how we live; changing how we work, exercise and even shop (especially for toilet roll).
I’ve had Ulcerative Colitis since I was 14, but fortunately I’ve been without a flare for 8 years and I’m a very active 27-year-old, living and working in London, enjoying my 20s as much as possible – sometimes too much!
Often, it has been easy to forget that I live with a chronic illness and that I’m on immunosuppressive medication (azathioprine) and so as you can imagine, when the media began to report the increasing threat around the world I wasn’t sure what to think or do. This blurred period continued for several weeks, whilst the UK continued to try and carry on as normal, singing Happy Birthday whilst washing our hands.
As we went into lockdown, I received a text from the Government telling me I was high risk. I knew that this was related to my immunosuppressive medication, but it was still difficult to understand what this pandemic meant specifically for me. Many people are immunosuppressed and of these, multiple diseases are treated with my specific drug. I later found out this message was sent to patients who take azathioprine, regardless of what condition they have or what dosage they take. This shows how important it was for me to go in search of answers and the one thing I had in my armoury was my PhD in life sciences.
It’s fair to say that even now, the media is a minefield of misinformation on TV and on social media. The Government’s information can often be generic and there were so few research publications available for me to read through, as we are still in the very early stages of understanding this virus. The saving grace during this time has been charities, and specifically for me, Crohn’s & Colitis UK.
Their information has been invaluable in working out what this pandemic means for me and my chronic disease.
Finding accurate and relevant information can be a challenge and so I would urge people to look for reputable sources. The Government website is great for top-level information from Public Health England about what staying at home and self-isolating means, but more specific information is available from condition-specific charities.
Navigating this sea of information has also highlighted for me the importance of looking after our mental health in this challenging time. Both a lack of information and misinformation can play a role in this. I have now found out that the NHS website will be linking to Crohn’s & Colitis UK – which reassures me both as a scientist and someone living with Colitis.
My advice would be don’t be disheartened, the information is there. And trust charities who will be working closely with experts and the NHS.
We want to continue helping people like Henry find the information they need but we can only provide our much-needed support services thanks to people like you.
Can you donate and help us continue to provide a lifeline for people with Crohn’s and Colitis?