What we most need: thoughts on chronic illness

Many of us remember Miranda Hart, the comedian extraordinaire who rose to prominence with Call the Midwife, winning comedy awards and four BAFTA nominations.

I recently heard Miranda interviewed on BBC Radio 4’s Today programme. She spoke with Emma Barnett, who started by reminding us that we haven’t heard from Miranda for some years. This was because she collapsed, was bed-ridden, alone, and lived for a long time without a diagnosis. She was finally diagnosed with Lyme disease, but has been living with terrible fatigue and chronic pain for years. Without rancour, she spoke the following words:

‘What we most need is to be heard, accepted, love and seen. When you are not seen by the medical profession, it is very hard indeed.’

I heard this and thought of a good friend of mine who has been suffering with an auto-immune illness which developed soon after she had the first Covid vaccine. She has been passed from pillar to post and only now is beginning to get in-depth medical help. I think of someone else I know who struggled with endometriosis that was only slowly taken seriously; and another falling through cracks, trying, for two years, to get treatment for his chronic leg ulcers. Of course, we know the medical profession is struggling and under-resourced, but these chronic complex medical pictures often leave our hard-pressed medics scratching their heads, not knowing what to do.

The thing that interests me is the psychological trauma associated with non-diagnosis and not being seen and taken seriously. How must it feel for others to dismiss or even deflect you away from your experience, because they don’t know what to do? I believe that we need our experience of gnawing uncertainty and living with a mystery to be understood and seen – for how hard it is. When you are already fragile, it is a further blow not to be taken seriously, or to feel your experience is minimised. It can be a long slow wound. As a healthcare professional with limited resources and already overwhelmed, you might appear to be making an experience smaller, or coming to ‘a solution’ too easily. You don’t have the energy, the resources, the space or maybe the imagination to engage with complex problems. You’ve only got a certain number of tools in your toolbag.

I am not blaming. Many try to help every day and do their best. GPs are doing an average of 26 hours a week. What do we do when doing their best is not good enough? We have systemic crumbling, but I am concerned about the impact of needs not being met over time, about erosion of confidence and the hidden wounds that make people shrink from the world rather than trust it. I write about the interaction between loneliness and trauma in Chapter 17 of my book 20 Ways to Break Free from Trauma.

Miranda Hart also speaks about her own experience of aloneness and isolation. She writes in her book I’ve not Been Entirely Honest with You that being overwhelmed did squeeze out her joy. Yet, over time, she was able to turn something around. She says two things helped her. First, developing a practice of acceptance of what was happening to her, and secondly, becoming determined to find joy again in the place she was in, in the tree outside the window, in the small moments; and through the comedy, the moments of fun and play that are her particular gift. She was slowly able, through the experience of enforced isolation, to work out what she really wanted to do in her life, to find meaning in her dreams and be determined to take steps towards them.

I have pre-ordered Miranda’s book. I want to learn more about her journey and what she found along the way. It is clear it was a long slow job. It can really help to be inspired by the struggles of others. To hear their subjective experience, shared openly and honestly. We feel less alone. We feel understood and seen. Thank you Miranda.