By: Michael Jackson
In my role educating health professionals about post-polio conditions it is important to compare and contrast aspects of other health conditions with Late Effects of Polio (LEoP). Doing so helps professionals to connect the features of different health conditions in their knowledge schema (internal map of information).
The current pandemic has provided numerous pathways by which to relate polio epidemics and viral health consequences to the lived pandemic experience of health professionals. A pathway of particular interest is long COVID – the lingering or re-emerging symptoms that occur months after recovery from the initial coronavirus infection.
In a TIME article published in late August 2021 about recent findings for those experiencing long COVID, the closing paragraph was particularly striking. The point being made was not about specific features of long COVID, but about a broader view of clinician-patient interaction. The statement by David Putrino, Director of Rehabilitation Innovation at Mount Sinai Health Systems, was:
“It’s the tip of the iceberg of enormous potential inequity and disparities in health. Most persistent symptoms are invisible symptoms, and walking into a doctor’s office and saying you have extreme fatigue [only] gets treated seriously when you’re not a member of a historically excluded group. And when you are, in many cases you don’t bother to even go to the doctor’s office because who is going to believe you?”
While the statement is about long COVID, it contains some clear parallels that those who experience Late Effects of Polio will recognise.
The statement highlights some persistent problems that polio survivors continue to experience and report:
- Having, and reporting on, persistent invisible symptoms
- Health professionals not fully grasping the impact of symptoms
- Health professionals making assumptions (i.e. expecting paralysis)
- Being in a recently excluded (or ill-recognised) group
- The frustrations of not being heard and becoming disenfranchised with health care
It is important for those who are health professionals to understand and recognise prevalent conditions – including their essential facts, figures, patterns, protocols, interventions and outcomes. It is also important to understand the aspects of a condition which are not easily seen, and which are not within their lived experience.
It will be years if not decades before we come to fully understand what we currently describe as long COVID. In the meantime, those who have experienced LEoP are well positioned to provide perspective on the lived experiences facing long haulers.