Chronic: continuing for a long time
Stolen: something belonging to someone, taken without permission
Happiness: a feeling of pleasure or satisfaction; a good feeling
I have ulcerative colitis, which is a chronic disease of the large intestine (colon). The lining of the colon becomes inflamed and results in tiny open sores which produce both mucous and pus. During an attack, symptoms include abdominal pain which is both crampy and constantly searing, making sitting and breathing difficult at times. Bloody diarrhoea which is frequent and urgent, interfering with even the most basic daily activities.
This is a disease that is not easily spoken about because going to the toilet to make a watery bloody pooh every half an hour with unrelenting pain is not considered polite conversation. Or even impolite conversation. It’s as uncomfortable as the symptoms which the sufferer feels the need to hide. But what makes having this disease particularly difficult is the loneliness and the persistent fear. The fear is constant. The only way to try and manage it is to put it in a compartment of my mind, sometimes letting bits out in order to attempt to process it.
I have recently come to realize, almost 18 years after I was first diagnosed, that this disease has continually and chronically stolen what should have been the happiest moments of my life. And although I have lost, others too have paid the price for that theft.
I was diagnosed as a 21 year old in my last year of university. In study week of my final speech therapy exams, I became so ill that the only way I could study was for my mother to read all my notes to me over and over while I lay in bed. I could not eat and could barely drink anything without almost unbearable abdominal pain. The exhaustion from the battle to focus on my work felt overwhelming.
I managed to write one exam next to the bathroom at university with my much-loved professor intermittently coming to tell me rude jokes to make me blush so that I didn’t look so pale.
I wrote the remainder of my exams in hospital with a naso-gastric tube; a drip and a fan blowing on me to try and reduce my high temperature. Always with a slightly traumatised invigilator wondering why I didn’t just write my exams in a hall in January.
This was to be the first of my dramatic hospital stays. Buoyed by my friends and family and amazing well-wishers, I tried to pretend that writing exams in hospital after nights of wondering if I would die and other times wishing to die, was an experience I could process with peace and courage. But I was raging inside and the courage came from realizing how badly I wanted to have a ‘normal’, full, healthy-looking life. I had so many dreams, so much to be thankful for and so much more to hope for.
And I still do. But now I realize that unless I truly acknowledge what this disease has taken from me and live with it more openly, I will, in some ways, be a prisoner forever. The purpose of this blog is to share my journey in order to heal myself, as well as to encourage others to do the same. I have celebrated the miraculous and wondrous moments in my life as well as the more mundane ones, but I have never truly mourned the life this illness has not allowed me to live.