THAT WAS THEN….
Up until 2010 I had only ever met 2 other people with Crohn’s Disease – a work colleague in 1992 and a neighbour a couple of years later. I had deliberately avoided joining any patient groups. Why would I want to go out of my way to mix with a load of “sick people”?
After initial surgery I had spent long periods in remission and never had a flare-up bad enough to be hospitalised. My only contact with Planet IBD was when I saw a consultant, sometimes six monthly, yearly or longer. My only knowledge of what it was like to live with Crohn’s was from personal experience.
Then in 2010, with surgery beckoning, I started using SoMe and suddenly I found the online IBD Community and “met” lots of Crohn’s patients, albeit in cyberspace. I then went on to meet a couple of them for a coffee.
….BUT THIS IS NOW
I recently had the privilege of taking part in a patient workshop. So what happens when a small group of Crohn’s patients get together, not virtually, but sitting round a table to discuss the cost of the disease to the patient? (and not forgetting the valuable contribution of one patient on speaker phone)? A number of things :
The barriers and taboos of “normal” conversation go out of the window. No subject is off limits. Any embarrassment disappears.
It quickly becomes obvious that whilst we share many of the same experiences, we all have a unique take on the disease and the way we cope with it.
The atmosphere is one of empathy and not judgement.
My overriding thought, having listened to everyone’s story, was what an amazing thing the human body is. The pain and heartache it can inflict upon us but also its ability to survive against all the odds. Even more remarkable is the human spirit and how it copes with a failing body and the mental anguish that a chronic disease can bring with it.
I also learnt some very specific things such as what a Hickman line is or why some patients have a Portacath or what it is like trying to claim support payments.
At the end of the workshop one of the non-Crohn’s participants said that until you do this sort of exercise you cannot understand how all encompassing living with Crohn’s is or, for that matter, any chronic disease.
I’m looking forward to the follow-up workshop later in the year.
…as an added bonus we were given a guided tour around the Bowel & Cancer Research laboratories by one of their very enthusiastic pharmacologists who explained some of the research projects underway