Hidden in plain sight

Long Covid has given Kathryn Jones a unique perspective into accessing healthcare with a less clearly defined or hidden impairment

Kathryn Jones Physiotherapist at Cardiff and the Vale University Health Board
Kathryn Jones is a physiotherapist at Cardiff and the Vale University Health Board

It can be a challenge, even as an experienced physiotherapist, I have found it difficult to navigate.

Long Covid has put a spotlight on the suitability of exercise in energy limiting conditions. I thought I knew what fatigue was until I experienced the debilitating fatigue associated with Long Covid myself. 

I am interested to see how as a profession, we move with the research, raise our profile in specialist Long Covid services and make best practice common practice. 

Providing a safe space for all of our patients to feel seen and heard can be our most powerful tool.

I wrote to mark Long Covid Awareness Day 2024. Here is an abridged poem titled;

‘What’s this?’

‘You’re still not feeling well?’, that’s what they said

Yes, I am finding it hard to stand upright or get out of bed

‘Go back to work, try some yoga and meditation’ But I feel like I’ve been put on a ton of sedation

‘We don’t know how long it will last or how to make it better’ ‘Go home, take some rest (and we will try not to upset her)’

My symptoms are loud but to some they are silent

Plain in sight, yet hidden, called non-compliant!

‘You’ve got Dysautonomia’ Well that’s a new one to me

‘There’s less blood in your brain when you stand up you see’ 

‘Your heart’s pumping like crazy to get blood back up to your brain’, ‘Try some meds’, some relief, something I can sustain! Some days are good, some are bad ‘Have you heard of PEM?’

‘Don’t exercise, eat well’…..What should I do then? 

Behind the smiles, the tears and the person

lies a whole new world of learning not a new burden

Watch your words, make them kind, For we never know what research will find. 

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