“I’ll get there!”
“Better than I was a few years/weeks/months ago!”
I’d say I relay the above statements approximately 5 times a day when talking about my Crohn’s Disease. I used to think it was because answering questions in this way is ‘easier’ than being honest, or because they save time in having to explain myself again and again. Then I realised these idioms aren’t actually making things easier – they are simply a cop-out. They are a cowardly reaction to a scary question. That question being;
“How are you?”
The reason I consider such a straightforward question so daunting, is due to the answers bursting to come out upon hearing it.
On any given day I feel AWFUL. I rarely ever feel, what ‘normal’ people may consider, ‘good’. Just managing to get through a day can seem like a feat of gargantuan proportions with a chronic illness. There are so many weird and wonderful symptoms in living with Crohn’s that it’s almost impossible to have 24hrs without at least one. So when you feel horrible all the time how do you differentiate from one horrid day to the next?
For me, since my diagnosis several years ago, life has been a whirlwind of doctors, nurses, scalpels, toilets, medication, toilets, surgeons, scalpels, and toilets. Did I mention toilets? It can become almost like another full time job just trying to keep track of all the medical appointments, blood tests, procedures, prescriptions and various medications required to keep the disease in check. It’s also incredibly tiring feeling distinctly unpleasant all the time, and the frustration at living a ‘sickly’ life has a tendency to spill over when you are constantly asked after.
Now I entirely appreciate that previous statement in itself may sound incredibly ungrateful; however, living with an incurable, and relentless condition can be… well, relentless. Most patients’ find they don’t want to spend their lives eating, sleeping and breathing Crohn’s. (Albeit as a rule that first two are rather rare anyway). When I am asked how I feel my first reactions are a diseased melting pot of emotions liable to spill over at the drop of a toilet-lid. I generally feel grumpy; (do I have to relay this same sad tale AGAIN?), angry; (how many times do I have to tell you I’m not getting any better?!), depressed; (this is my life and I still feel sick), irritable; (I just wish I could tell you I feel ok just once), but mainly, most predominately, sad; (this is upsetting everyone around me and I hate it). When I relay all of these emotions outside of my own head it sounds like a merry-go-round of borderline insanity. I feel childish and embarrassed when I admit I struggle with my disease. I feel it somehow makes me weak mentally, when I already feel so very weak physically. This is of course, entirely in my head. A place it’s easier said than done to escape from at times.
Living with Crohn’s Disease is distressing. Its life changing and whether you want it to or not it will enter every aspect of your life. You may not always be in control of how the disease affects your body, but it’s really up to you how much you let it affect you mentally. It’s vital you talk to someone about your feelings. Let your loved ones in and give them the chance to help you. This aspect of living with my illness has been one I’ve struggled with for years, but eventually the time comes when you need to accept that those around you will love you whether you feel you are worthy of it or not. Having Crohn’s does not make you less of a person and it should not define you. The strength it takes to maintain a ‘normal’ life with an abnormal condition is impressive enough in itself – if you can cope with getting personal with the porcelain between 10-100000 times a day, you can cope with almost anything.
So what to say the next time someone kindly asks how you are? How about honesty? Don’t sugar-coat how you feel; why should you? You are living with this 24hrs a day. If the recipient of your answer is repulsed at the thought of your illness for 30 seconds out of their day then they didn’t care to begin with. Remind yourself you are worthy of love and care and that Crohn’s Disease is not, and never will be, all you are.
How are you? I’m good.
Written by Kathleen Nicholls from Crohnological Order