One Sick Pony
I’m a 32 year old woman. I was 26 years old when I was finally diagnosed with a chronic illness called Crohn’s Disease.
For those not familiar with the condition, it’s an ‘invisible’ illness which causes inflammation of the intestinal tract and disease itself can be located anywhere from the mouth to the anus. On the scale of sexy diseases, it’s probably pretty far down the list. Who made a scale of sexy diseases anyway? What’s wrong with you? PERVERT.
It's not all invisible
Due to the invisibility of the condition, it’s often difficult to express how you feel without fear of judgement or disbelief. If you look fine on the outside, it’s natural people would be surprised to find you feel like your intestines are about to combust on the inside. But it’s not all invisible. Many of the treatments, medications and general upkeep in living with the illness can leave side effects and symptoms that are far from invisible.
Before I knew I had Crohn’s, I had arthritis. In my knees, at 25. Nothing majorly unusual about this I hear you cry, but I was of the assumption at that time that OLD people had arthritis. Pensioners, who are generally slow and live at a snail’s pace, anyway, have the defunct bones and muscles because that’s the way of the world when you start to age. In my mid-twenties, I suddenly found myself in excruciating pain when I so much as bent my legs. I was despondent and miserable, and depressingly in the position of considering treatments and taking drugs and having ABSOLUTELY MASSIVE needles stuck into my knees. I couldn’t enjoy dancing or swimming like I once had, and couldn’t even cross my legs without discomfort. It was an odd, new and unexpected situation.
Continuing pain with Crohn's
Mere months later I was in agonising pain higher up – in my stomach. I was suffering from another issue, the aforementioned Crohn’s. If I’d found the arthritis a frustrating challenge up to now, I had no clue what was ahead of me.
I was a young woman, being wheeled in and out of hospital and terrified. I managed, around my hospital visits, sick leave and treatments, to have as normal a life as possible in an abnormal situation. But the little things you will inevitably encounter when living with chronic illness are often those which leave a mark that’s far from invisible. Blood tests left my arms bruised and sore and cannulas left tiny life-long scars over my hands and arms. Intense courses of drugs left me either bloated like an inflated hamster or painfully pale and thin.
There was, there is, no happy medium.
When I had my surgery, I fretted my stomach would look repulsive when I came out the other side. I worried I’d have a stoma, and that I wouldn’t be able to adapt. That I’d have to dress in unflattering smocks for the rest of my life. And, that the man I love wouldn’t dare consider engaging in intercourse with me for at least the next few millennia. Looking back now, I realise that the worry around my operation really was just the cherry on an already highly calorific anxiety cake. I became aware that my so called invisible illness was having a much bigger impact on how I viewed my body than I had realised.
Young women as a rule have difficulty with the way they view themselves. There’s always at least one part of the body we hate/wish we could change/find abhorrent. I don’t think that necessarily fades with time, either. Maybe we just learn to live with those bits a little more, or find solace in the fact that someone we care about finds something beautiful in them. (Not that we all require reassurance from another person to appreciate ourselves of course). I’ve got a big nose and a big chin for example; I hated them with a passion as I grew up. Then I realised my Dad has the same features and I absolutely adore my Dad, so it’s nice I have something of his. When people say I look like my Dad. I take it as a compliment. As a teenage girl that wasn’t so easy, but now I accept he was a handsome devil in his heyday and is a wonderful person. So, what could be wrong in his daughter carrying some of that on?
Focusing on the positive
Trying to see the positive in what you perceive to be imperfections isn’t as easy as it should be. It can be made infinitely more difficult when your body, internally and externally, can change so much with a chronic illness. Like many illnesses of this type, they are incurable, so viewing changes in your body positively is an ongoing and relentless struggle.
I try to focus now on what I can change. If I look pale, I make up my face a little. If my skin and scalp are dry and sore, I lather myself in sweet-smelling creams until I feel luxuriant.
If all else fails I stand in front of the man I love in the nude and see if he runs out the door screaming and crying in horror, or grins from ear to ear.
Once I finally manage to beg him to come home and dry his tears, I feel I can achieve anything.
Will you help us understand the impact of Crohn's & colitis by taking the IBD In America Survey (US only)?