I Am Still Learning...

On the bookshelves to the right of my desk there is a brass plaque, engraved with the Michelangelo quotation, ‘I am still learning’.  It was given to me by a very dear colleague when she retired from the classroom next to mine, back in 2012. She felt that it summed up my approach, both to teaching and to life, and I agreed.  Even though I’ve now left the classroom myself, I still agree.

Back in the depths of the 2025-26 winter, I felt that the health service had failed me. I felt that, because my accumulated medical conditions were chronic rather than acute, and especially because I had now retired (so there was no pressure to get me well so I could go to work), I was being left to my own devices to cope with worsening pain. This was taking a physical, mental and emotional toll, and I was becoming more and more despairing and withdrawn.

I never thought that I’d be grateful to catch covid for a second time, given how ill it made me first time around. Three or four years earlier, I’d had covid and bronchitis simultaneously, been very ill indeed, and had developed what my GP reliably informed me was long covid.  I missed six months of work and had honestly never been so ill in all my life.  This time around, covid itself wasn’t nearly as severe, but again I seemed to find it difficult to recover, and was advised that I almost certainly had long covid once again.  There’s even a school of thought that once you have long covid, you never really recover- it just lessens and intensifies as you deal with passing viruses and infections. At the end of January, my GP ran some tests, tweaked some medications, and referred me to the Long Covid service run by the NI Northern Trust.  I waited, wondering about what, if anything, would come of this.

After six or seven weeks, I had a letter from the Condition Management Service to say that I’d have a phone appointment one Thursday morning; that if I missed this, I’d be discharged from the service. I awaited the appointment with my customary level of anxiety, worried that I’d say the wrong thing, present with the wrong symptoms, somehow mess up the opportunity. When the appointment was over, I remember sitting looking out the upstairs window, over the sea, in a state of complete amazement. I already felt helped.  I already felt supported.  As it’s in vogue to say these days, I felt seen. I’d been listened to with empathy, practical support suggestions, compassion, good humour, and understanding.  This was not, it seemed, really about long covid; it was about living with ongoing, permanent, chronic health conditions, like the ones I have. I had stopped feeling that I was suffering pain 24/7, but that nobody believed me; or that those who did had long ago developed compassion fatigue. I found myself agreeing to something I never thought I’d do: group sessions, online, on Teams, every Wednesday morning. 

As the weeks passed, the group Teams sessions did too.  There were sessions on pain management, mood management, confidence, assertiveness, diet and nutrition, and more. There are still a few to come. At first, I attended only on the basis that I’d been reassured that I could leave my camera and microphone off.  After a few weeks, I was hesitantly turning my camera on and contributing readily to the discussion in the ‘chat’ function. I was looking forward to my Wednesday mornings, instead of feeling anxious about them. Most of all, I was recognising faces, names and initials among the other fifteen or so participants, and feeling so much less alone than I had for many years. I mentioned this, enthusiastically and with great appreciation, in one of my 1:1 phone check-in appointments, as the weeks went on, and was offered the chance to join a six-week Thursday evening online course run by Arthritis UK. I didn’t have to think: I said ‘yes please’.  That course is now about to end; today is the final one of those six Thursdays. As part of this week’s homework, I’ve been asked to reflect on and write about what I’ve learned.

First of all, I’ve learned that I can push myself out of my comfort zone and do things I find scary.  Despite being a lifelong introvert (and completely at ease with that), I can turn on my camera on a Teams call.  I can message in the ‘chat box’ and I can even speak out on the microphone (when I don’t forget that I’m still on mute). I can take a risk with what I say, and not beat myself up about giving what might be construed as ‘the wrong answer’.

More importantly than that, I’ve learned that, just because nobody among my close family, friends, and former work colleagues suffers from chronic health conditions or chronic pain, and have sometimes struggled to understand what my experience is like, that doesn’t mean that I’m alone.  On my Thursday evening course, I’ve felt a bond with the other dozen or so participants, hearing their stories, learning a bit about their lives, as we discuss the challenges we face, and try out strategies to make our lives better.  It helped, too, that the two course leaders are directly familiar with arthritic, chronic pain conditions themselves.  And it helped that there wasn’t a session of the course without laughter: at the situation, at our challenges, sometimes at our own expense. That laughter brought us together.

I’ve learned that the toolkit that lives in the garage at home isn’t the only kind of toolkit I might need.  We’ve spent the six weeks discussing strategies for living with chronic pain: not for curing it, because you can’t, but for helping, for relieving, and for living well. The long-awaited course books finally arrived this week, and I’ve already started dipping into this manual to find more detail on some of the topics we’ve discussed. I’ve especially liked having to set an action plan each week, even if, on week 1, it made me roll my eyes slightly as it reminded me too much of being at work! I’ve liked being accountable, to myself and to the group, for taking exercise, getting more sleep, or writing about gratitude. I’ve found it useful to keep a pain diary too: it’s made me take notice of just how much pain I’m in, some days, and what influences this… in my case, a mix of over-exertion and the changing weather.

I also learned about just how much I mask.  I’m very adept, even now that I’ve retired and don’t have to dress up for work every morning, at making myself presentable, pasting on a smile when I might recently have had tears in my eyes, saying those words ‘I’m fine’. Sometimes, even feeling I’m being listened to properly makes me feel that I’m much better than I really am. I know I came across as very upbeat at my last GP appointment, even though I was in pain, exhausted, and very anxious about a few new diagnoses, simply because my GP was being so helpful and so kind. I know it’s been the very same in the Condition Management appointments, Teams sessions, and the Arthritis UK sessions.  I’ve simply been so delighted to find a forum which helps so much, that I’ve come across as feeling much better than I really do.  It’s a bit like the person who falls over, and immediately gets up, laughs, and says ‘I’m fine!’, then limps off hurriedly to cry their eyes out somewhere where they can’t be seen.

Even on the Thursday evening course, I suspect I presented as being ‘fine’, even though there were evenings when I was in agony while I listened in, having had a difficult day before logging on at 6pm. I’m sure there were times when some of the other participants wondered what I had to worry about: I’m retired; I don’t have a young family to look after; I think I was one of the oldest participants, so I don’t have the anguish of being in my twenties and wondering whether things will ever improve.  What I mentioned only briefly, in week 1, was that I’ve had chronic pain since just before I turned 30, so just over 25 years.  And it’s getting worse.  Yes, I go for a walk most days, because the beneficial effect on my mental health simply cannot be measured, and because I live in a beautiful, seaside location and enjoy taking coastal photographs.  But sometimes I’m blinking away tears behind my sunglasses on a bright May lunchtime, because walking like this hurts so much.  Sometimes I go for two walks in one day, because sometimes I wonder how many years I have left when I’ll be able to go for walks at all: I want to make the most of it while I still can… and yet, even with chronic illness, it’s possible to have imposter syndrome!

I’ve written far too much.  When the group leaders set the homework, to write about what we’ve learned in our six-week course, I’m sure they didn’t mean anyone to sit at a computer, writing over 1000 words.  I suppose I’m still learning to edit myself. Still learning to get it right.  But as I’m writing far too much, I might as well include what I’ve learned in these last three months or so from both the Arthritis UK course and the Condition Management Service, because the combined effect of the two courses has absolutely changed my life.

I’ve learned that I’m not alone. I’ve learned that nobody has all the answers, and nobody has it easy all the time. I’ve learned that sometimes you just get a lucky break and find the doctor, the medical professional, the volunteer group leader, who just understands and wants to help. And who does help, in a practical, tangible way. 

I love living near the sea. I’ve always found being near water calming, consoling, and a reminder that I’m really only a very small person in a very vast world.  As I look at the waves each day, I know that I’ve been right in the depths of that sea when it comes to the effect that chronic pain can have, emotionally and mentally as well as physically.  I feel lighter, at the moment; I feel that I’ve learned some practical and practicable strategies to help myself, and to help others to help me, from both programmes I’ve been following, and simply from the anecdotes of others on the courses.

And I know that I have more to learn. I have my coursebook.  I have links to websites.  I have booklets and PDFs and ideas for what I might do next.  I am still learning.

I hope that I never lose the hope it takes to learn.  And I hope that the people who helped me learn, on those Wednesday mornings and Thursday evenings, keep learning to live well too.

I can’t thank the Arthritis UK course leaders, Nicky and Christina, the various Condition Management facilitators – Physiotherapists, Occupational Therapists, Mental Health Nurses, Dieticians, and especially Dr Sweeney, and my GPs Dr Donnelly and Dr McKergan, enough.  It quite simply broke my heart, when chronic ill health meant that I had to retire prematurely from a job I truly loved. But these last few months, I’ve learned to find joy in the life I have now, and the things I can do to make it better. 

I hope I’ll always keep learning to live well.