Explaining ME in the workplace

Raising awareness of ME is always a good idea – yes? 

But is telling others about your experience of ME always a good idea?

There are many creative ways to describe to friends and family how ME affects the way you feel and disrupts your life. You might unfortunately fear that being so forthcoming with your employer, line manager or work colleagues may backfire, causing them to lose confidence in you, could lead to resentment or bullying, or affect your prospect of promotion or job development.

You are not obliged to disclose any health issues to an employer unless it could lead to health and safety problems.  You may feel you have to give some explanation however if you decide that ‘reasonable adjustments’ or changes in your workplace or work routines will be necessary to avoid relapsing, to enable you to continue working, or be effective in your job. You can also ask your employer or line manager to keep the fact of your illness confidential, and s/he is obliged to do so, when practical.

Many written introductions to ME highlight the severity and long term nature of the condition, which may not aid your employer’s understanding of your needs if you are mildly affected. Though your employer may have access to NHS, DWP or Union leaflets about CFS, so you should be ready to explain exactly how ME affects you, how this could affect your ability to do your job, and if necessary, how your approach to treatment and management differs from NICE recommendations!

Research employment & disability

Do some research or consult an advisor to find out about your rights and your employer’s responsibilities as this might affect what and how you disclose – a good place to start is the ME Association’s leaflet: Employment issues and ME/CFS

Pitch the info at the right level

Any leaflets or videos about ME you offer your employer should be short & easy to digest – the Canadian guidelines for clinicians might be overkill! You can always give more information later once you know what they want or need.

Decide how much info to give

If you tell your employer you are recovering from a severe phase of ME, then you will probably have to give them a lot more info about the illness and ask for more support, than if you are requesting one or two adjustments to your work practices in order to enable you to keep on an even keel and avoid relapse. Read the ME Association’s leaflet for ideas on Explaining ME/CFS to other people

Decide which info to give

Try to work out the key triggers that will make your symptoms worse and which adjustments could help. A US article gives some suggestions: Working with Chronic Fatigue Syndrome & Myalgic Encephalomyelitis   You may need to provide your employer with information about specific difficulties so s/he can suggest feasible changes e.g. for sensory overload, activity pacing, pain, mobility & travel, cognitive problems.  It may not be necessary to mention ME at all if you only need adjustments for a symptom that is common and easily understandable e.g. migraines, back pain