Really ‘living’ with a long term health condition

Written by Jane Bayley

Jane Bayley's one-page profile

Jane Bayley’s one-page profile

When I was first diagnosed with ulcerative colitis nine years ago I had no idea of the impact it was going to have on my life.  I thought “Ok, now it has a name…give me the medication that’ll clear it up and I’ll be on my way!” But I soon realised it wasn’t going to be that easy.  I’ve spent the last nine years having regular colonoscopies, stays in hospital, constant medication changes and every enema going.

Back then, I presumed that you got poorly, got a diagnosis, and then got on with it.  I honestly thought that if I struggled on each day, did what the consultant, G.P’s, and specialist nurses told me then I could deal with what was happening to my body. But at 37, single and without any of the confidence I once had, I found that I had lost myself somewhere along the journey. I used to be outspoken and now I found myself letting doctors do the talking for me.

My person-centred journey started when I received a phone call from my GP who thought it was time that I considered surgery. This had always been the last option in my mind and not something I was ready for but I felt so powerless when it was suggested. I couldn’t find my voice to say how I felt. Something had to change. It was then that a colleague at work introduced me to person-centred thinking tools on the ‘thinkaboutyourlife’ website and I started to realise that I could take back some control.

The website was full of tools that I could use to help me deal with living with a long term health condition. As I started using the tools and writing about how I felt, I realised that there were so many things that really upset me about how people treat me and my condition, and the presumptions that people make on my behalf. It was such a good feeling (and emotional at times) documenting how I’d like to be supported and what didn’t work for me. The one-page profile was particularly therapeutic as the process made me analyse what a good day looks like and what a bad day looks like and how loved ones could best support me. Just being able to put some of these thoughts into words had a huge impact.

My one-page profile is blue. Anyone who knows me understands how important that colour is to me, and I even like my photo.  It was taken on a ‘very good day’.  I sent copies to the closest people in my life, parents, brothers, sister-in-law, best friend and ex-husband.  I had no idea what they would make of it, as all this was new to them too.  I was amazed and happy that each person took the time to sit with me and talk about what they’d read.  Everyone said they were surprised how much impact colitis had on my life day-to-day, and I had a few telling’s off for struggling on for so long on my own.

I was able to show my boss and have a very honest discussion about what my needs in the workplace are. I showed my best friend and got her to understand that even when she had my best interests at heart, it didn’t feel good when she questioned my diet or how I was managing my condition. My family read it eagerly and absorbed it well. I felt like they really listened to me after that. Even my 73 year old mum read it and took a short holiday from her ‘mother knows best’ stance before returning with full vigor – I have come to accept that you can’t win them all!

I recently completed a course of intensive acupuncture recommended by my Colitis Nurse, Rachel. I’d finally found my voice and given a very firm and very loud ‘No’ to surgery. I wasn’t ready to live with a bag and I was no longer afraid to say it. Rachel said she would work with me to try all the alternatives. I started the most restrictive diet known to man, cut my working hours and stopped pretty much all my socialising for a fortnight.  It was drastic, and I’m sure if you are reading this it doesn’t sound like much fun, but during those two weeks I went back into full remission and have remained in remission since.

Developing my one-page profile has dramatically improved how I cope with colitis each day. Just being able to communicate to people who are close to me how I feel and the support I need has made me look more positively about the future.  I still get bad days, but I no longer feel like I have no control. My wish is for every person that lives with a long term health condition to use the website, explore and use the tools, and build their own one-page profiles enabling them to regain control of their lives. I wish I’d known about person-centred thinking tools when I was first diagnosed. It has changed my life.