4 Reasons Why It Can Be Difficult to Share 'Good' News With Chronic Illness
“So, is your back better or not?” ask nice people on the school run. I really wish I had a simple answer to offer, but like a lot of things surrounding chronic illness, the outcome of my recent bout of treatment is not entirely simple. Here is why people you know with long-term conditions may not sound as optimistic as you might expect even if something good has happened.
1. We have more than one problem.
Even though my physical problems center around one area – my back – there is more than one difficulty with it. The pain at the base of my spine has improved greatly thanks to recent injections in the facet joints, but all the
issues around my central spine, which is supported by metal rods, are completely unchanged. This is not to say I am ungrateful: being able to sit for a bit longer is lovely. I am very pleased not to be taking a cushion everywhere. However, leaning over to write or type once I sit down, which is central to any work I do, isn’t any easier, and sitting more comfortably actually means I have painfully overdone it a few times.
2. We may not have had realistic expectations.
When the base of my spine went wrong, it made the long-term pain in my higher back, neck and shoulders feel worse too. As I understand it, this is because the pain pathways in my brain got stronger. I therefore hoped that
everything would start to feel easier if my injections worked lower down, but I don’t think these things happen that quickly. Rationally I never really thought they would, but I think I was secretly hoping that I would snap back to where I was a couple of years ago immediately, and I definitely have not.
3. We aren’t sure if improvements are permanent. I have had successful injections before, for a different problem a few years ago, but the effect wore off after a few weeks. So far the recent lot have lasted for nearly two months, so I’m very optimistic, but I frankly don’t entirely trust my body anymore. It has been in continual pain since 2011 and seems to have a capacity for sudden nasty surprises.
4. We don’t want to let you down – again.
People who care for me will feel (almost) as upset as I do if my health takes another step back. Also, if I rush ahead and assume that I can commit to more things because my health has improved a bit, I will have to dump them if the improvement doesn’t last. I have had quite enough of letting people down over the last few years and I don’t want to keep on doing it.
So please be patient with anyone you know who is sounding very doubtful about improvements to their health. They aren’t just “being negative” and desperately want to get properly and lastingly better. Chances are that their situations are complicated and they’ve been let down too often to shout any improvements from the rooftops.
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