Why do you go to hospital?
Is it because you’re in so much pain and need relief and answers?
Well you’re like me then, only going when it is beyond your threshold and you need help. The pain was unreal and unbelievable earlier and every time I’ve been come into hospital I’ve always experienced pain; they are forever intrinsically linked in my head. So now, it’s incredibly hard to think I can still be here without feeling any pain. I feel quite fraudulent.
Added to that, I am in the same room from my last admission; my ostomy surgery, all that pain, blood, fear, shock, disbelieve. I am her now, with my stoma, unsure if this is happening, if this is real. It’s weird. It’s making me quite low and emotional. I just want to get through the night and get discharged and be home and never have to be here again.
Do I hate hospital now?
Do I? Do I hate hospitals?
Well, I certainly used to when I had never set foot in one as a patient before I was sick.
I had no idea how they worked and in those early days of Crohn’s Disease, I knew nothing. I was still reeling, still processing and I was oblivious to what was going on around me. It took me a long time to get my butt into gear and advocate for myself, but my nosey nature kicked in a couple of months in, when I was in and out of hospital, trying to get my flare ups under control. I started paying attention. And I haven’t stopped since.
These days, I am no longer so tied to the hospital as I once was. My last admit my was my ostomy blockage in November 2016 – an extract from that first night in hospital is above, my source of inspiration here – but I do regularly attend clinics, had infusions, check ups of my stoma, meeting with my team; I am still there. But I am not a sick patient any more. I am just a patient.
A patient who is advocating for not only herself but helping others. I now see the hospital as a ‘visitor’ but removing my patient lenses is difficult. It’s been such a long time I’ve been a patient, had such a journey, trained myself to be a good patient – respectful, involved, responsive, diligent – switching to a new role is hard. I suppose my ability to be a ‘good patient’ has helped doctors and nurses realise this potential. That’s a good feeling, one that makes me incredibly proud. It is also what makes me determined to help others.
Hate is a strong word. I’ve had bad experiences in the hospital, terrible things have happened but so have the good moments. I’ve been supported and encouraged, giving me the drive to move on. Giving me the ambition to continue doing this – writing, sharing, participating, helping – even on my blue days.
So, no, I don’t hate the hospital.
It’s where I started to become who I am. Who I want to be, who I strive to be.
It’s part of my journey, part of my process.
It catches me when I fall.
Seeing it from the other side, a visitor, a patient representative, an advocate; that’s just icing on the cake.