By Joy Devlin, 07 May, 2018.
What do you think of when someone says they have M.E.? Most of us know that people with this disease are ill. They lack energy, are in pain and have a host of other ailments.
They may need time off work, and in some cases are house or bed-bound. They have good days and bad days. There is no cure.
Maybe you have been misinformed and still believe it is all in the mind, that people with M.E. are lazy.
They don’t sound like ideal employees, do they?
Over the last 33 years I have experienced several episodes of M.E., interspersed with periods of remission. I have at least twice believed that I was cured and would not relapse.
Since I first developed M.E. I have graduated from University twice and worked in sales and marketing within the Biotechnology industry, as a Business Change Consultant in financial services, as a self-employed Professional Kinesiology Practitioner and as a Special Educational Needs Teacher.
That makes me sound pretty successful doesn’t it?
The reality is that I have spent much of the last 33 years in a state of unremitting exhaustion. I have also been forced to retire from work due to ill health.
Not a victim
I have had long periods of earning very little or no money. I have gaps in my pension provision. I need support from my husband, both financially and practically.
But I am not a victim, and I am not totally dependent.
Fortunately, in the workplace, most managers genuinely want to help. But, due to lack of information and guidance about M.E. they can make mistakes.
The most important skill I have developed is to recognise when my body is reaching the limits of its endurance, and rest before I have done too much. In my case I sense exhaustion, aches and the beginnings of non-responsiveness in my muscles.
I can usually finish what I’m doing but know that I need to sit with my feet up and take it easy for a while. If I can do this quickly, I can often avoid a crash. But when I worked full-time, I could not stop and had to keep going. Inevitably I would then crash and have to take time off work.
Message to employers
My message to employers is that if someone with M.E. needs to stop what they are doing, it is better to let them stop immediately. They may need time off, and yes it will be inconvenient, but it can avoid them taking much more time off later.
If you employ someone who has M.E., or are considering employing them, ask them about the condition and how it affects them. Start a dialogue.
We all have different sets of symptoms and different coping strategies, which may benefit from working part-time, with flexible hours, or working from home. Simple things like being able to park near the door of the office can make a surprising difference.
Please show them you can be patient and understanding on days when they are in pain or have brain fog that is temporarily preventing them from thinking straight.
You will be rewarded, as anyone who has the strength and determination to want to work, despite their M.E., has a great deal to offer.
- Free downloads of ME Association leaflets relating to employment (and education) and a Factsheet about M.E. are available for ME Awareness Week.
The ME Association
We help people with M.E. and their families.
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Help us continue to make the UK a better place for people with M.E.
Thank you.