It’s sadly very easy to feel alone and isolated in living with a chronic illness like Crohn’s Disease. Even if you are surrounded by loving family and friends, who are more than willing to offer unconditional support and understanding, it can sometimes feel you are acting to appease them rather than sharing the worst parts of your condition.
One of the hardest things I’ve struggled with since my diagnosis has been having a proper and honest conversation about my illness. I know I don’t talk as much as I should to my partner or my family. I don’t think I even talk as openly as I should with my doctor! I chat a little with my friends, but not all of it. Because let’s face it, who wants to hear about me feeling miserable 24/7? They may say they do, and they might even act like they want to listen, but why would they? Those questions flutter around my head relentlessly like dying moths every time I consider talking. Yet I feel disappointment when people assume I am ‘fine’. Then remember that’s my constant mantra so it’s almost entirely my own doing. (I didn’t for a minute say it was logical).
Like most people with an incurable illness, I spend most of my day thinking about my condition, because I spend most of my day feeling it. It makes sense then that we should want to try and forget about it when in the company of others. But that often doesn’t go to plan. Particularly it would seem in my case. I bottle up and eventually explode (again internally) and feel isolated and alone. It’s all of my own doing because I KNOW my loved ones want to help. I struggle to let them, and want to be the ‘me’ I was before Crohn’s crash-landed into my life. It really is true that talking helps; but I think it’s the lack of tangibility in conversing that I feel stops me. What I mean by that is that I generally have to medicate myself up to my eyeballs and have something physical to ingest in order to improve my health, it doesn’t seem like simply getting things off your chest, audibly, will make a lick of difference. It’s a tricky mind-set to get into.
I sometimes feel stuck, because I can’t begin to understand how people find it so easy to express themselves. I don’t do it for a myriad of daft reasons [fear of upsetting people or worse; boring them to tears, fear of people abandoning me, fear of my illness become a real thing that’s actually happening to me if I talk about it, fear of boring myself, etc, etc to infinity] all of which I know are daft reasons if I stop and think about them for more than 30 seconds. I can talk about how I feel until the cows come home on here, a public forum; which all things considered should be about a million times scarier, but I seem to lack the ability to find the words to do it face to face.
So I’m trying, a little more day by day. I’m trying to tell myself its ok to lighten the load and allow others to share my load. I’m always professing just that to everyone else in my life, and all of you, so it’s about time I finally took my own advice. I’ve taken bigger risks in my life than waxing lyrical on my defunct bowels so there’s nothing to stop me but myself. You too x x
Written by Kathleen Nicholls from Crohnological Order. Visit her site for more personal stories about her life with Crohn’s Disease.