One of the trickiest tightropes to walk with a chronic illness is managing your relationships. Yes, I choose the word ‘managing’, as cold and clinical as it may seem, because you may find that not everyone is able to ‘step into line’ and cope with your illness as well as you might. You may have to dedicate more time and patience to certain branches within your family tree. Perseverance may be a frustrating necessity in gaining the understanding and support of those you love. You may initially feel this should never be something you should ask for, or something that would even be in question. It should naturally be unconditional? But it often takes those around you much longer to begin to understand you have an incurable illness than you do.
There can be countless reasons for this. Some people simply can’t ‘handle’ illness. They have a certain tolerance for sickness and only a limited amount of sympathy. No patience for patients. I am personally ashamed to admit I was guilty of this (to a certain degree) pre-Crohn’s. Like the rest of the civilised world, I unquestionably hated to see my loved ones unwell. I was caring, helpful, and considerate – but only seemed to have a certain tolerance for showing compassion, before silently thinking that they should really SNAP OUT OF IT by now and are really almost bordering on hypochondria for goodnessSAKE. Thankfully those feelings dissipated when I myself was diagnosed with a chronic illness. I realised that although there are of course hypochondriac’s in the world, there are more people suffering from genuine illnesses which they can’t simply shake off, and would absolutely prefer not to have. It’s one of the few benefits of having this disease, the empathy for others that seems to spread like wildfire the longer you live with it. You can see others suffering in an entirely different light.
The other difficulty in coming to terms with a loved one having IBD is in the cloak of invisibility it’s shrouded in. The majority of our symptoms are under the cover of skin, so outwardly we generally ‘don’t look sick’. (Thank the lord for small mercies). Personally I’m torn over whether or not that’s a good thing. It’s a blessing no one can see our diseased bowels as we would probably be better off joining a travelling freak show if that were the case, however it can be a useful tool for acting ‘normal’ when we don’t want to discuss our illness every minute of every day. People often find it incredibly difficult to understand why we don’t ‘get better’ and why the illness just doesn’t go away. If we had broken limbs and our loved ones could gradually watch us slowly heal over time they would perhaps find it easier to deal with. There would be a full stop on it all. But unfortunately Crohn’s is not something that will simply ‘heal over’; it’s there for life whether we want it there or not. It’s the diseased elephant in the room who doesn’t ever forget. Neither should your loved ones.
Written by Kathleen Nicholls from Crohnological Order