All of a sudden awareness week is upon me again. 2020 has been a unique year, and I haven’t done much to raise awareness of Inflammatory Bowel Disease (IBD) – I’ve been just getting on with life in lockdown, and then with children isolating as bubbles burst.
However, it is an important week, so I’m going to make a bit of effort!
Here in the UK, Crohn’s & Colitis UK have set up a challange or event each day this week. You can read about all 7 of them here. I’ll be doing the #4FactsChallenge tomorrow, and will wear some purple on Friday. If you want to get an insight into a day in the life of someone with IBD, then I do recommend the In My Shoes App which will let you follow along for a day.
I know a number of advocates have been struggling with there place in the IBD awareness world recently, as the emphasis seems to shift to an influence rmodel. It’s really positve to see people with hidden conditions and stoma bags featuring in advertising and marketing, and building podcasts and businesses. I’m not sure I see myself as an adsvocat enaymore – mostly because I don’t seem to find the time to dedicate to it, but I still occassioanlly drop into the forums and offer advice if I can.
I think what I would want people to be aware of this year is that some people with IBD will be really unwell. They will need frequent trips to hospital, be debilitated by their condition, or by a combination of several conditions making treatment difficult.
Another group might not yet have found the right treatment, or have drug therapies failing, so having been well will now be unwell again.
Another group, particualrly for those with Ulcerative Colitis, will have had surgery (perhaps several times) and will be currently well – like me.
And a further group will have found the right treatment for them, and will be well. Working, enjoying life and exercise with minimal impact from their disease.
All of those people have IBD. It isn’t a competition about who is most unwell, who has had the most surgeries or different treatments, or who posts most on social media. We are all of us united by a disease that we still have lots to learn about, so as you read through the various posts this week, remember that everyone’s journey is unique. If your recently diagnosed, don’t feel that surgery or a life unable to leave home and be away from the toilet is inevitable – it might not be your path.
Connect and share as you wish – but remember first and foremost to look after yourself – you don’t owe anyone anything in respect of your illness. Right now, the coronavirus restrictions mean everyone is emotionally drained, so try to just breathe and do what you need to do survive, so next year you can thrive.