Saturday, 27 September 2014

My Crohn Personal, Disease

Spending more time than I probably should on social media, has brought up an interesting issue for me lately. Aside from the usual; getting disapproving looks from my significant other when I check my phone AGAIN in the middle of watching a film. 
Lots of you message and email me querying your symptoms and whether or not I've tried this drug or had that jab, whether I've felt this pain or had that side effect. What I seem to constantly relay is that no one's Crohn's Disease is the same Your Crohn's is not my Crohn's. 

Like any illness there is always a strange undercurrent of competitiveness amongst it's sufferers. It's a strange human trait that spreads like a virus the longer it's left alone. 
Comparing your symptoms to others can of course be helpful in gaining knowledge and an understanding of your condition, however it can also lead to feelings bordering on inadequacy. 'Ive never had surgery so my Crohn's can't be as bad' 'I don't seem to be in pain a lot so maybe I shouldn't be talking about it..'. 
I've seen occasions of people being shot down in flames in group discussions because they still have all of their insides or because they've only been on one treatment and so far it's working. How bizarre. How strange that other humans have the urge to 'better' one another by reminding them that THEY are worse off! The rules of logic don't even seem to apply. 

There is no positive outcome from reminding the world (or in this particular example: a fellow, and vulnerable, patient) how awful you've had it: think about this for a moment before posting graphically about your experiences; will it help to ease the worried mind of the person you're directing it towards or will it only serve to terrify the briefs off them? Will it make you feel more satisfied? Why? What is lacking in your life that you feel it necessary to play the victim? 
If after mulling those thoughts over you still post then fair enough. 
I just fail to understand what benefit comes from attempting to out do someone else in a similar position. Isn't the point of communities and help-forums to share knowledge in an informative and supportive way?
When I was first diagnosed I was given so much misinformation it terrified me. Amongst other symptoms I was told I'd go blind, lose my entire stomach, require a bag for life, eventually get cancer, lose all my hair, etc etc. 
In reality I lost some of my intestines and a lot of my hair. Not nearly as horrifying. 
It's a culture of shock and drama that people seem to thrive on. Always clambering for the worst case scenario. 
The reality is Crohn's Disease, and chronic illness as a rule, is really pretty rotten. But everyone is an individual and everyone suffers differently. What treatment works for me may not work for you, it doesn't mean I am better or worse off than anyone else. I'm just my own woman with my own body and my own miraculous rack. No one can tell me I  don't FEEL a certain way because only I feel it. I decide when I can't cope and I reach out for help. I don't allow someone to tell me I'm 'not that bad because I..' BLAH BLAH BLAH - I know my own body and abide by it's rules not anyone else's.
Crohn's is very hard to live with and can affect all areas of your life. You just have to decide whether you live with it or against it, because the latter is a much harder climb. Especially when you are constantly batting away horror stories. Trust your gut. Sometimes it won't let you down.


  1. Great post! I've noticed the same sickness competitiveness in the community and it's something that really needs to stop.

  2. Excellent! I feel the temptation to "impress" people with my Crohns experience far too often. I try not to give in and you've made a brilliant argument for that effort.