This is the first picture I ever took when I was in hospital for my Crohn's. Sadly not my last. This is the story of my diagnosis and one of the hardest things dealing with it.
As you grow, your ideas of what you want to be grow with you, some might say they just become more reasonable. But you still remember the dreams you had before.
When you dream of having a big house and a fancy job, you still remember dreaming to be a flying princess with a magical Pegasus.
That’s why it becomes even sadder when all of your future dreams seem to die.
It’s one of the hardest things about being diagnosed with an incurable disease is. Dealing with the death of the future.
When you deal with the news of being diagnosed I can’t really explain all of the feeling that it brings. But today I wanted to write about one aspect which has taken the longest to deal with. Dealing with the change to how you see your future and the story of me receiving the original news of my diagnosis of Crohn’s.
It feels like everything you ever thought of, every passing wish for the future, is now taken away, out of reach. Kind of feeling like the death of the person you thought you could become. I could have been anything. But now I can’t. And dealing with that is harder than you think. I had built up a few versions of myself that I thought could happen. But with all of them I was healthy. A detail in my mind when I would think of future me. But now that detail is changed forever. Nullifying the bigger things I actually cared about.
In June of 2014 I was told after my colonoscopy that it looked like Ulcerative colitis, which is the other form of IBD. The first picture shows the part of my bowel which is practically healthy, like a smooth fleshy tube, and the second image shows what my Crohn’s looks like, sore and inflamed.
It took 3 weeks for some of the biopsies (small tissue samples taken) to come back from the lab for a more detailed report of the inflammation on a cellular level so I had a follow up appointment. I don’t live close to the specialist that I had for this appointment so my mother and I had to drive up to where it was happening for the day. We go in for this appointment and it’s not the doctor who we were meant to see because there was a surprise consultation or something so we had this other doctor which I was fine with. But one of the most innocent and chilling phases came out of his mouth. To understand how chilling this phrase was you have to first know some of the build-up. Throughout my months of tests and hospital admissions the one thing the doctors kept on saying was ‘we just have to rule out Crohns’. Because it was the worst scenario of what my symptoms meant. And in the end being told I had ulcerative colitis was bad enough because they are both an IBD (inflammatory bowel disease). So imagine the sadness and pure shock when I sat down and heard-
“Let’s talk about your Crohn’s”
…
…
“I don’t have Crohn’s I have ulcerative colitis” I said.
“You should have received a letter”
And that’s when it hit me.
I had the thing that the doctors ‘just wanted to rule out’. It was like hearing the news your relative had died the day after you being told they just pulled through and were on a respirator but were stable. Accept it was the news that all of your hopes had died. I begin to cry as I write this despite this still happening so long ago.
Because the death of something, even after you mourn, it is hard to think about.