… And sometimes to other people. Not big lies, but small ones. In particular, when people ask me ‘how are you?’ I’ll say that I am fine , or good, or ‘a bit tired and sore’. Why? Although I am very open about my IBD and surgery,mit is much easier to say I’m fine than to to tell the truth.
Things like ‘I’m fine as long as I am sitting down.’
‘I thought I was going to pass out doing the washing up.’
‘I am so tired by the weekend that I take long sleeps, and am neglecting my son, my wife, my share of the household duties and my friends.’
These responses are likely to result in more questions, sympathetic looks and a shift in attitude that I don’t want.
SomI keep telling the little lies. And the more I repeat them, the more I believe them to be true – despite evidence to the contrary. For me, the specific evidence over the last few weeks has been an increase in pain, bleeding from my former fistula tract and fatigue. With the fatigue and pain I’ve been more irritable, particularly at home. Oddly, sitting was fine,which meant that working was fine, albeit still on reduced hours.
Then there was a reckoning. My wife got sick, catching the suspected norovirus that had gone round our son’s nursery. He’d had it, I had a very brief period of fast filling bag (turns out not having a colon does have one advantage) and she was very ill, unable to stray too far from the bathroom. So I had to step up, and do more. And it was hard. Very hard.
My wife recovered and we spent the weekend away with my parents and sister, me sitting at the side of the pool at Center Parcs unable to really swim for fear of contaminating the pool with the discharge from my former fistula. The water proof pants and pad only hold for so long.
So on Tuesday morning I called my consultants secretary before work, she called me back and I was seen urgently in clinic. The referral that had been made to the specialist tissue viability nurses had not had a response in the three weeks since I had seen the consultant, and the pain and bleeding had been increased. So today I pootled back to the hospital surgical assessment unit where I was seen. It had been hoped that a vacuum dressing would be used to promote healing, but it was assessed as not being suitable due to the position of the fistula tract, so a anti-microbial alginate based gel was placed in the tract and a dressing applied. Stronger pain killers were prescribed. If there is no improvement in 2-3 weeks there may need to be a refashioning of the wound.
So, apologies to anyone who feels in any way betrayed by my deception, like many patients I just didn’t want to burden you.
Thank you for your honesty Rich. However, not everyone sees it/you as a burden.
We ask because we care and want to know genuinely how you are, so please don’t feel that you have to respond with “I’m fine, not too bad, im OK” which you do do. We also ask so that we can get a better knowledge of the condition that you live with and how if at all possible we could help. So please feel free to stop saying you are fine etc when it is clear to me/us that you are not.
Hope this helps in some way.
Really like this Richard, would like to see more stuff like this. Although difficult, your situation is fascinating and should be shared as it is still grossly overlooked for a condition that affects so many. More of that raw honesty combined with that gallows humour please.
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