It’s very important to remember in living with a chronic illness, that you are not alone. I don’t mean that solely in the sense of you as the patient having someone to support and care for you, but in remembering how your illness inevitably affects those around you.
Often in my lowest moments, my main thoughts drift to what an absolute pain in the neck I must be for my partner. How it would be so much easier, and infinitely more fun for him if he had elected to spend his life with someone ‘normal’. I worry that what I want for us, and for our future (from the massive to the mundane), is unachievable because I am almost always sick or in pain. I worry that he will feel he is losing out because of me.
I feel pathetic and weak in these moments and I hate to think of him ever viewing me in that way too. I try to remember the times he has been ill himself. I’ve never looked on him as being feeble or weak due to something out with his control, I’ve only ever tried to ease his pain or suffering and quietly wept for him to be well. I’ve prayed to a God I’d long since given up on that he would be dancing around the kitchen and playing air guitar with our cats at the earliest time possible. So I remember these things not because I want to picture him ill of course, but because it helps to cancel out the feelings of inadequacy I often feel about my own illness. It helps to reaffirm the fact that we are a partnership and not ‘carer and patient’.
It’s vital to remember how important that relationship can be: regardless of who cares for whom. You may live with your significant other, family or friends – irrespective of who pays the rent they all have their own role to play in helping you keep afloat both mentally and physically. Don’t ever take those who love and care for you for granted, and don’t ever doubt that they go above and beyond for you not out of a misguided sense of duty, but because they want only the best for you. If that means all they can do is mop a fevered brow or run you a bath then so be it. It possibly seems a small step to them but it’s a giant leap towards independence and positivity for the patient.
Written by Kathleen Nicholls from Crohnological Order. Visit her site for more personal stories about her life with Crohn’s Disease.