How can you help me integrate my long covid care?
BMJ 2022; 376 doi: https://doi.org/10.1136/bmj.n3102 (Published 27 January 2022) Cite this as: BMJ 2022;376:n3102
- Carl Jreidini
When I contracted covid-19 my symptoms were mild and my initial recovery rapid. Then, overnight, everything changed: fatigue, brain fog, and neurological disturbances followed. I was experiencing long covid. More than 18 months later I have improved, but my recovery is still a work in progress.
As I searched for ways to understand and manage my symptoms, it seemed conventional treatments and medication alone would not be sufficient given the multi-faceted nature of long covid.
Trying to collect the pieces
From the start, an integrated approach seemed the most effective. I do not dispute the capabilities of conventional medicine; however, it can be quite specialised. I preferred to take an approach that considered the whole body, and which combined functional medicine and alternative therapies, such as traditional Chinese medicine.
This became my starting point for an exercise in information gathering and sharing that continues still. I have spent hours searching for answers to my questions about long covid in medical research, covid support groups, forums, and seminars. I would then share my findings with the people treating me. I zigzagged between specialists, who included neurologists, an endocrinologist, a doctor of internal medicine, integrative doctors, functional medicine practitioners, a specialist physiotherapist, a fatigue clinic, and my supportive general practitioner.
Like a puzzle, pieces of information had to be arranged one by one in the right place to get some answers to my questions. No-one had all the pieces, but at least between us—and with relentless trial and error—some ideas were emerging. Eventually, I discovered a combination of approaches that helped improve my symptoms and through it all I found comfort and strength in my faith.
Finding a collaborative balance
No strict rules apply to managing long covid. Different practices suit different people, but the end goal is essentially the same. For me, individual approaches or treatments had merit, but the power came in combining them, and the aim was to find the right blend and balance. Long covid clinics in the UK can be a useful way to offer an organised medical response. But, in the UK, truly integrated clinics that comprise multiple disciplines are not readily available to all. Patients have to do much of the coordinating themselves.
By taking the lead on my care, I have developed new insights into wellbeing and healthcare, and I see value in a collaborative approach where patients have more involvement. I hope that this cooperation will yield better results for people with long covid but also for those with other chronic conditions.
Fortunately, some encouraging initiatives are now taking place to understand and treat long covid. In time, I am hopeful we will find a comprehensive solution for this condition and others like it. In the meantime, we have an opportunity to learn more about ourselves, to develop more collaborative, open-minded relationships with healthcare professionals, and to become—at least in small part—our own integrated physicians. I hope we can look back on this concept positively, despite the challenges that so many have faced.
What you need to know
Develop a collaborative relationship with your patients and respect their suggestions
Support patients if they explore alternative therapies to treat long covid
Do what you can to centralise the patient’s recovery plan
Education into practice
How could you work more collaboratively with your patients who are experiencing long covid?
How could you improve your knowledge of the evidence base for non-medical treatments for people managing long covid symptoms?
What could you do to help patients centralise their care and plans when they are being seen by multiple specialties?
Footnotes
Competing interests: No competing interests.