This blog is inspired by an online conversation I had this evening with an employment specialist. His comment wasn’t taken negatively, it just made me aware that much more awareness is needed as to why Stripy Lightbulb CIC is needed.
We were discussing M.E/C.F.S patients and employment, I was explaining that only patients with a ‘mild’ severity (around 25% of all patients) are able to be in employment. The other 75% would be unable to commit to set hours due to the fluctuating nature of the condition and the severity of their symptoms. To say otherwise would be positive discrimination.
A ‘moderate’ or ‘severe’ patient would not be re-entering employment while they have that level of severity (the severity often reduces over time). If they struggle to find energy to clean their own teeth or make a simple meal how would they be able to work? There are ‘moderate’ patients who are able to be self-employed as they can work from home, and only work when they are well enough. They would not be able to manage their health within the constraints of an employer’s schedule.
Patients have to rest when their body starts to shut down. M.E/C.F.S bodies can’t ‘push through’.
The point that was made to me earlier was that –
It may be trite to say but the only way to get more disabled people into work is by employing more disabled people.
That may be true but when 75% of patients are unable to work that statement just doesn’t work. It’s not that we can use special equipment or have adaptations made in the workplace to make employment possible. There is no way to put energy into an M.E/C.F.S body when it is crashing (caffeine and sugar are short-term boosts but we crash twice as hard).
As Jack Butterworth from Cure ME said to me this week, the way he explains M.E to his friends (not an official statement from Cure ME – I need to stress that!) is that-
Patients aren’t ‘tired’. Their cells are tired. In fact, their cells are knackered.
The cells of M.E/C.F.S- affected human bodies are knackered. That is why every single bodily system is affected. Our cells don’t create or use energy as a normal ‘healthy’ human body does. Bodies need energy to function. Every single thing a human body does requires energy. In terms of employment, that would affect concentrating, reading, writing, typing, walking, thinking, and communicating. That’s if we can even make it into the office!
That is why only 25% of patients with a ‘mild’ severity can work. We have ‘just enough’ energy to be able to work (with difficulty). We are the lucky minority.
Getting more disabled people into employment is a positive step but employers need to understand that not every disability can be overcome with adjustments or ‘mind over matter’.
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