guest post hawmc

“Face of my Disease”

Introduce my condition. Picture. My relationship with my health and condition. Few interesting facts about myself as a person AND as a patient

I’m sat in a local coffee shop, writing. I do this quite often, and it strikes me how much of a creature of habit I’ve become. How easily things have become to get used to.

It never used to be like this. Having an incurable, invisible illness changes you, it must, I believe. I haven’t always been since, nor have I always had my condition; in fact it’s only about 18 months old.

I have Crohn’s Disease, an Inflammatory Bowel Disease (IBD) which is a long term condition that inflammation of the lining of the digestive system; from mouth to anus. Common symptoms are diarrhoea, fatigue, abdominal pain and weight loss. Other symptoms (extra gastrointestinal) range from mouth ulcers, joint pain, eye infections and skin complaints. Crohn’s can affect any part of the digestive tract and can spread. Notice here that Ultraitive Colitis (UC, another IBD) is located to only the large bowel; Crohn’s can be more extensive and aggressive.

Luckily, for me so far, I’ve yet to see my Crohn’s spread further than it was when first diagnosed in Sept 2011. Despite being only located in my colon, my disease rapidly went from mild to severe within a couple months, meaning my medication doses and strength grew exponentially somewhat overnight. My last medication was a subcutaneous injection called Humira; an Anti TNF drug that helped control and vastly reduce the (then chronic) inflammation I had. I finished that in the New Year and have been on courses of Predniosolone (steroids) since to control the lingering inflammation.

Eight times out of ten, I manage my condition extremely well and am able to go to work and maintain a good lifestyle, despite my dietary restrictions. Acceptance of my condition was an extremely fraught process which took me into counselling to help me through the worst of it. I write my blog to help deal with the depression and anger I feel (and felt) as part of my diagnosis. I’m 24 and feel about 70 some days when my subsequent joint complain flares up. But I still keep going.

Despite the anger and depression, I would classify myself as a good patient. I have yet to refuse or dismiss a treatment course my GI (Gastroenterologist) advised me to take, or fail to turn up for a test or procedure. I trust my GI to do what is in my best interest, what is best for my disease at that point in time. I would rather try and fail at a medication that be too scared to take it. At some point, you have to live and let live, trust your doctor to treat you the best way they can.

I am a graduate but stuck in an unqualified job because my health problems have and still limit my body to move onwards. But, I am working. I am glad of my job for the most part; it keeps me sane when I need rescuing from the crap that my condition throws at me, at periodically inconvenient times. But I keep going.

I keep going.

If my condition has taught me anything, it is to know it will always get better. You might have to go through some pain and question life and yourself before you get there, but you will get better. Having some faith in another person to take care of you is important. As we go on with our conditions, as they grow and get older and we get more comfortable with them, as we learn more about them, we take back some of the control they have over us. It is a battle, I won’t lie, but it such a rewarding feeling knowing you are fighting against it and winning. And you will, you will win at some point down the line. Keep hold of that.