[I have been reflecting on this subject for a while now, and it seems some what apt to give it some words and a voice right now..]
As you know, I spent Thursday afternoon at the hospital being given my Humira shot. No big deal, no big whoop – it was very much needed and appreciated, but I got this niggly feeling whilst there – I am just a patient to them. Nothing more.
I was accompanied by the boyfriend and it was a little awkward. He hadn’t been with me to see any doctor or nurse or any member of the Gastro teams with me – so far he’s only come with me to have some blood takes, easy peasy, nada – my parents have always been with me when its been a consultation or test / scan results. For him to be there for my injection was something I was unsure about. But I am letting him in, and this seemed to a positive step forward.
But the look I got from my IBD nurse when she saw him was one of confusion. As if unable to comprehend that I am a person outside the walls of the hospital. I felt it when I told my consultant that I’d be back at work practically since he has last seen me in January. He was shocked. Albeit, he was proud of me for being so well after being so sick, but its a sort of bummer when I have to look at that perplexed facial expression. It is becoming more and more common, the longer I go into a period of health and the more I do in my life. I see it every time I tell someone new I do alot of volunteering work and when I mention this blog and my writing. Like, if I was so sick before, how can I be so well now? It is very very annoying and frustrating.
I am only a patient when I am inside that Treatment Centre and – god forbid – when I am admitted (again). Until that point, I am a person. A living, breathing, working machine of a woman. I’ve found the best way to live my life without flaring up and without complications. It is all very good at the moment. Until Crohn’s strikes its bastard hand upon me again..
When I spent those weeks in the Gastro ward, I was sick and unable to see how I would ever get better. I was happy to be treated as sick and as a patient in need of help from others. Sadly now, I am capable to do almost everything by myself. So this issue with my NEW inability to give myself my Humira makes me feel like a ‘out patient’ – it is the most unsettling feeling. That this one teeny tiny thing is making my emotions float right back to Ward 18, bed 6. Of being a medical mystery – at times – and nothing more. Of being a puzzle to be solved and not a terrified 23 year old girl who has no clue to why she keeps getting better for a while, then horribly flaring up again. I was happy to go along with it then – after all, I wanted to get better, wanted to get out of the isolation room and back home, back to life. But in the same breathe, I didn’t want to leave the ‘comfort’ of that world. I didn’t know – still don’t know – how to deal with Crohn’s outside of the parameters of Good Hope Hospital. I feel safe in those buildings. As as much as I feel at home in my own home, I’m not. But I am… its completely unexplainable, unless you’ve been there. And certainly something you can’t speak about very well without hurting someone’s feelings or pride.
So, what would I rather be, patient first, person second? Is there any way to be a person whilst being a patient? Do doctors and nurses just seem you as that; an NHS number, a body, a case, a puzzle?