Returning to Work with Long COVID - a Reluctant Pioneer
It’s twenty-six months since I first became ill with COVID-19. I spent three days in bed then crawled out for my first day working from home. I had a full, day-long telephone clinic list and I thought I was well enough to “see” these patients. With the benefit of hindsight, I now know that I wasn’t. For 10 months I continued working putting my symptoms, of what I now know is post exertional symptom exacerbation (PESE), down to the stress of living through the pandemic.
In January 2021 I had my first COVID-19 vaccination because I am a frontline healthcare professional. Within 12 hours of having my jab I was lying in bed with a fever and unable to even call out to my husband, sleeping beside me, to ask for help to reach the paracetamol and water on my bedside table. Within two weeks I was no longer able to put my hugely exacerbated symptoms down to living through a pandemic. I saw my GP who signed me off work for three weeks and offered me antidepressants. I realised I was one of the UK’s now 1.8 million people living with Long COVID. I also knew antidepressants were not going to cure me, or address my grief. I was mourning the loss of my job, my health, my ability to function physically and cognitively. My upset was not depression (I’ve been there, and I recognise it), my misery was appropriate and righteous.
I began to research and learn about Long COVID, now that I was finally not in denial, and I soon realised everyone else was also learning. No one had the answers. I was still very much a novice when I agreed to a three-week phased return to work, working form home, as per the local NHS Trust policy. It transpired, as those of you in the know will have already realised, I was not ready. I couldn’t concentrate, I couldn’t sit up at a desk for hours, I couldn’t stop crying.
It soon became clear that both Human Resources (HR) and Employee Health, did not really understand my needs and were working within policies that were not adapted to accommodating a long hauler. I was still learning how to advocate for myself and felt like I was being passed around by the people involved in getting me to back work like a putrefying hot potato. My managers were looking to Human Resources (HR) and Employee Health for guidance, and they were either policy bound or clueless. I realised I was going to have to educate them and learn much more about self-advocacy. I am not new to advocacy. I have been doing it for patients, my children (who are both non-neurotypical) and members of my family when they have been using the NHS, for years. However not for myself and certainly not when at my lowest physical, psychological and emotional ebb.
After failing the first to work after the 3 weeks phased period, I was off sick again. After a few more months passed, I was offered this time four week (oh the luxury of an extra week) phased return to work. By this time, I was only just starting to get access to Long COVID health services and access to health care professionals who could help me understand how to live with and manage my symptoms. Again, I realised I had not understood where I was with respect to my symptoms. In my desire to get back to work I had been over optimistic, and I had also succumbed to a fair bit of coercion by people who were not putting my health and well-being front and centre of the return to work process. The policies and the system just wouldn’t allow it. This second attempt to return to work failed, and all symptoms were exacerbated and made worse.
And now we are in the present, for what I hope will be third time lucky.
I am trying again but this time I feel much better equipped to do so:
· Since my previous two failed return to work attempts, I have been supported by my union representative at my “health and wellbeing reviews” with my line manager, Human Resources (HR) and Employee Health. The union representative has demonstrated to me how I should be advocating for myself and has shielded me from any zeal to get me back in post before I am ready. (This does beg the question why an organisation would want a healthcare professional working in the organisation who may not be able to do so safely, and it occurs to me the brutal answer is if I fail, I can be retired on medical grounds).
· I have been assessed by Occupational Therapist with skills in vocational rehabilitation, from a tertiary fatigue service attached to the Long COVID clinic. The Occupational Therapist listened and listened and listened some more. She heard me and understood me in a wholistic way, which I hadn’t previously encountered. She listened with the ear of an expert and devised a return-to-work plan that has the hallmark of someone who has put my needs front and centre. I feel that she has set me up to succeed unlike the colleagues in my workplace who have persistently (and not necessarily knowingly or maliciously) set me up to fail.
· Over time I have learned a great deal more about living with Long COVID, advocating for myself in meetings and educating my colleagues.
· I have reluctantly taken on the mantle of pioneer (my union representatives description not mine). I have realised that I am in the frontline fighting for the right to return to work safely and effectively.
Everyone that is living with Long COVID deserves the self-actualisation, dignity and fulfilment that comes from working as an expert in your chosen profession. Not to mention the financial security. Finding a safe and appropriate route back to work (for those of us that want it) is the least our healthcare employers should be providing us. They should be working in partnership with us to preserve our skills and service to their organisations, and we should not be content with anything other than an approach that puts our functionality, health, and well-being at the centre of the process.
I know this third attempt could also fail, it’s a journey and there are bound to be roadblocks, diversions and maybe even breakdowns. My return to work plan is my map and I am sticking to the route, even though already I am being asked to shorten the journey time.
