Thursday, 20 June 2013

A World of Our Crohn

It’s often incredibly difficult when living with a chronic illness to come to terms with the changes in your established relationships. This is an issue most people fail to appreciate may arise when they in the midst of dealing with their own pain and suffering. This is completely understandable of course, especially in the early days of a disease.

Most patients’ initial thoughts aren’t for those around them, as there is usually far too much information to be taken in from doctors and nurses from the get-go. But soon it can’t be helped and thoughts will naturally drift along to what must people on the outside of the hospital wards must be thinking. Of you. Of your disease.

For me, after vaguely managing to come to terms with my illness and the fact that I would be stuck with Crohn’s Disease for life, my worries turned to my loved ones. I became upset that my disease was beginning to affect them too. I hated seeing them suffer because of something I couldn’t control. I felt entirely to blame for causing all this additional, (and as I saw it at the time), unnecessary, stress. Of course I appreciate now that’s an entirely skewed view of things; the people this was affecting love me no matter what, and any worry related to my condition is part and parcel of that concern and can’t be helped.

One of my main concerns was how my friends, family and partner would perceive me following my diagnosis and eventual release from hospital. It wasn’t so much the cosmetic side of things, after all they’d already seen/heard/smelt me at my absolute worst... It was more how they may behave and the extent to which they would perhaps struggle to adapt to having a ‘sick’ relative.

Regardless of the illness, people around you can find it hard to gauge how to ‘deal’ with you post-diagnosis. You’ve suddenly become a ‘patient’ over a person and for some it can be easy to slip into pitying the individual or feeling you have to lighten the load, or withhold difficult news to spare their feelings.

At my lowest ebb I worried about how I would adapt to my new condition. I certainly hadn’t bargained on how others would feel as a result. I realised quickly I had to snap out of gloomy moods – I didn’t want to be pitied and I certainly didn’t want to be seen as a ‘health – bore’. The bottom line was that I didn’t want to spend all day everyday discussing my... bottom…  And I think, lovely as it is, most people around me would agree.

Friends and family of Crohn’s sufferers should try to remember that the person you love is still there, regardless of their illness. They haven’t changed.

..Well that’s not entirely true actually. They may have lost parts of their anatomy, or shed pounds, lost hair or found that they suddenly have a whole new appearance thanks to Crohn’s procedures or medications. Their outlook on life may also have changed; maybe they feel down or hopeless, or have spells of depression. But they still have the same heart. It’s still the same person you spent your childhood with, or watched/helped grown up, or fell in love with.

It’s important that those on the outside of the disease looking in sometimes try to remind their loved one of that when it feels like they are being lost to their disease. Think of it as friendly advice. This sort of steering has always stood me in good stead over the years. I would own a pair of knee high pink leather boots if it weren’t for a word in the ear reminding me they weren’t quite for me...

Crohn’s really isn’t ‘for me’ either, but unfortunately I’m stuck with it. Doesn’t mean I have to like it though, and I certainly won’t let it ruin the relationships I so dearly cherish.

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