Ten months ago, Mabli Godden couldn’t imagine how much her life was about to be changed by COVID-19. But now, as one of the many people experiencing the effects of the virus, she is trying to recover, as well as helping Healthcare Improvement Scotland develop the first UK guideline on Long COVID. In our blog, she tells her story.
In March of this year I was the most active I have ever been: commuting from Glasgow to Edinburgh daily for work, running two youth arts programmes, cultivating my own arts practice, lifting weights regularly, taking care of an active dog and all the typical things someone in their late twenties and early thirties might do with their lives.
But this was all brought to a very abrupt halt when I got ill – at the most inopportune time, with a million deadlines looming. I was bed-bound for nearly a month. Although I couldn’t access a COVID-19 test (they were only for those in hospital at this point) my GP diagnosed me, with a strong clinical suspicion, as being one of the many people to have been affected by the pandemic virus.
I attempted a phased return to work, though it became clear very quickly that large swathes of my job were no longer possible for me. As I work in the Arts, I lost most of my work due to the struggles of the industry, but I would have been unable to continue because of my health. It’s now December, and COVID-19 is still with me. I have had to adapt to a ‘new normal’, one that shifts each day: going from being a busy and active person to struggling to do the simplest of tasks has been incredibly difficult. Working with Healthcare Improvement Scotland to develop a clinical guideline on an emerging condition has helped me gain back some agency, and the guideline we have put in place will hopefully support others to gain that agency and healing as well.
Symptoms and support
My Long COVID symptoms have been bizarre and varied; the only thing that has been consistent is the crippling fatigue. Most days I sleep for between 12 and 20 hours and have done since March. I had a period of respite, where the fatigue was my only symptom from late April until late May and then I began to develop severe muscle and joint pain, brain fog, shortness of breath, chest pain, dizziness, exacerbated migraines, Raynaud’s and skin issues— among other things. The symptoms come in waves and often seem illogical and unconnected: they leave me deeply frustrated, upset and isolated. I am not an angry person and yet some days all I want to do is shout, but there is rarely enough air in my lungs to do so.
My anger abates somewhat and sometimes, now that better days become more frequent. I am slowly but surely starting to heal: my victories are small, a 20-minute walk where I only use my inhaler once, but they’re victories nonetheless.
I am lucky in that throughout this experience I have had a strong support network of family and friends – they have supported me practically, emotionally, physically, and, when needed, financially. I am very aware, though, that many people with Long COVID do not have these things, and struggle without enough support. I am lucky – and yet this is still one of the hardest things I have ever done.
Using my experience to help others
As part of the Expert Advisory Panel developing the UK-wide guideline for the treatment of Long COVID I attended multiple digital meetings to discuss the wide-ranging needs of Long COVID patients, and how these needs might be effectively addressed and treated by the NHS. Waiting to be ‘let into’ the first virtual meeting with SIGN (which is the part of Healthcare Improvement Scotland that develops clinical guidelines), NICE and the RCGP, was somewhat akin to the first day at a new school, but I was delighted to find that the meetings were open and welcoming with all voices listened to and treated as equal.
Myself included, there were five lay members on the panel (patients or carers of patients), we were there to represent the patient voice and discussed our own experiences and opinions alongside our perceptions of the wider patient voice and opinion. The guideline has also been sent out to various patient groups for comments, so a wide range of patient voices have been heard.
We acknowledge, as well, that Long COVID is ever-changing and not yet fully understood: this version of the guideline will not be perfect, things will change as more research happens, patient voices of their varied experiences are heard and discoveries are made. That is why it is a ‘living guideline’, this is not the final version and amendments will be made as and when they are found or required.
I am 10 months into this experience and am more exhausted than I thought it was possible to be, but I am starting to see the light at the end of the tunnel: these guidelines acknowledge us as a multi-need patient community who require personally-catered support. That person-centred and catered support may well be the turning point for our care as individuals and hopefully these guidelines establish a path to better health for Long COVID patients as a collective.
Mabli Godden is a Glasgow-based Theatre Practitioner and Community Artist and was a member of the Independent Advisory Expert Panel for the development of the UK guideline on the long-term effects of COVID-19.
To access the full guideline and the patient version, click here: www.sign.ac.uk.