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The Trouble With Being Chronically Ill in the Modern World

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It was January, and I was already missing my children since the school term started again, which was not very like me.

This is not meant as any insult to my lovely, lovely kids. But I have been suffering with widespread chronic back pain for seven years, and my days need to be punctuated with rest and sometimes naps. My energy budget is limited and my fuse is pretty short when the pain is worse than usual. Anyone with a chronic illness will appreciate that having the young ones around is usually even more exhausting for me than it is for most parents.

The reason I had been missing them more than usual, I think, is that we had quite a busy, sociable Christmas. Lots of friends came to us, and though it was tiring and involved lots of cooking, and I wouldn’t have managed any of it without my husband’s help, we all had a great time.

It was lovely to have the company, but more than anything, I had a purpose. I was organizing and entertaining and playing board games and I was In Charge again. A former teacher, I miss being in charge a lot, but my pain has been too severe and too unpredictable in the last couple of years for me work regularly. Of course I remain a mother even when they’re back at school, and being a mother will always be my main job, but in term time, the forgotten musical instruments and the stacks of laundry don’t command my full attention.

In today’s world, we all need to find our purpose, as they sang in Avenue Q. Our purpose has evolved way beyond staying alive long enough to procreate and nurture our children to maturity. Thanks to an evolutionary drive for improvement and a capitalist drive to sell us new experiences, we are all encouraged be our best selves, fully realize our potential and enhance our wellness. Most of us have a level of health and freedom unheard of a few generations ago.

Yet the mental health statistics show that this does not appear to have led to any corresponding upsurge in happiness. Our potential to be at our best seems to have resulted in most of us feeling an obligation to be on our best form all the time. If we are not living our best life, instead of just being alive, we are failing — failing ourselves, failing those around us, wasting our time. We are more aware than ever of our options, yet any one life only has time for some of them. We know theoretically that success in some areas must come at the expense of others, but we don’t really believe it. We think we can and should all have it all.

When I began to suffer with back pain out of the blue in 2011, my assumption was that I could fix it. Everyone else assumed the same. I was diagnosed with adult-onset Sherman’s kyphosis (like scoliosis, but forwards, and disguised by back muscles working overtime to hold me up). The causes of this are uncertain but I am assured that no amount of good diet and exercise would have stopped it. I tried every other treatment going before having long metal rods fixed into my curved spine a couple of years later, but the partial recovery that this lead to was, sadly, only temporary. My few non-fused discs are now acting up, plus my shoulders, and I am in constant pain that tablets only partly relieve. I was devastated to be told last year by a pain management specialist that there was little more that they could do for me.

Yet the diagnosis of this being as good as it’s going to get has resulted in a strange freedom. Over the last seven years I’ve tried everything — from surgery and medication to acupuncture and shiatsu. I have spent a fortune on physiotherapists and osteopaths and hoped for the sky, but nothing has provided more than temporary relief. However, the knowledge that there isn’t going to be a magic wand that sorts it all out means I am no longer continually obliged to keep searching for one.

In many ways, having this experience many years ago would have been far worse. Where would be the painkillers that I take day and night? Where would be my beloved hot pad and massaging chair and so on? Model analgesics aren’t perfect, but oral morphine is a great blessing when I have to resort to it, and I am continually grateful to the NHS for its supply.

But, if I’d had this in centuries past, would everyone I meet still suggest a cure? Did the Victorians leave their invalids in peace, or did everyone, apparently, know someone’s cousin’s husband’s sister who had this, and was cured by this pill/operation/therapist/astrological alignment? Would there be the feeling — which I’m sure I often imagine, but not always — that people are thinking that I could cure this if I wanted to, or tried hard enough, and so I must be choosing my situation, even unconsciously? People suggesting cures mean well, I know, and goodness knows I have done it to others myself, but it creates an expectation that a cure must be possible.

People used to live with many more incurable conditions, or die young. Whilst one would never wish to go back to that, it is harder to live in a state that is comparatively rare. Until I developed a chronic illness, I was largely unaware of their existence. My grandparents had things, as do most elderly folk, and a friend’s mother had MS, and a friend of a friend had lupus. There were probably people I knew struggling with health issues, and I was very aware diabetes needed constant vigilance, but I thought you mostly got better when you got sick. Most people do.

Now I am aware that my life is very limited by chronic pain, and it isn’t fair, and it isn’t aspirational, and it isn’t anything that anyone would choose. I have had to let go of being a teacher, which I greatly enjoyed and which made me feel useful in the world, and which also meant financial security. That has been the biggest loss, although silly things, like being able to dance badly with my husband, are losses too.

There is some compensation. I am more keenly aware of the reasoning behind the current vogue for mindfulness. You learn to be grateful for things when life doesn’t work out how you planned, as cheesy as it sounds. My husband, my kids, the dog, a sunny day, a cheerful bird and so on. And, of course, life involves loss of all kinds for many people. But the lost potential that come with chronic illness is not a loss that is often discussed. On the one hand, mine isn’t a life-threatening condition, thank goodness, and on the other it is not a narrative involving heart-warming victory, because it won’t go away. I am full of admiration for people who overcome cancer and run marathons to celebrate, but my health woes are less dramatic in either direction, and so less deserving of a headline.

Our liberation from so many things that used to threaten us, such as infectious disease and debtors’ prison, is unquestionably a good thing. Yet I think our children need a more nuanced message from us than: “You can be anything you want! Reach for the stars!” when, by definition, few of us ever become well above average. Life is better for the majority of us than it ever used to be in times past, yet we need to emphasize this and be grateful, rather than worrying whether we doing it justice.

Luck still plays a huge part in things for everyone. So please stop asking us when we’re going to get better. Those of us who struggle with chronic illness are understandably bitter, on a bad day, that we weren’t more lucky with our health. We should not be made to feel constantly guilty for it too.

Getty image via SMSka

Originally published: June 25, 2019
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