My top 5 tips to more effectively manage your invisible illness in the workplace

I have an invisible illness, 16 years ago I caught a virus and didn’t get better. Eventually I was diagnosed with Myalgic Encephalomyelitis, it has taken me many years to understand the illness let alone spell it! There are many of us suffering with these invisible illnesses, which despite being crippling at times, have no outward visible effects. That brings a set of unique challenges that need to be managed to minimise the impact on both yourself and your job.

There have been two marked occasions where I have needed to involve the company I worked for in my illness due to the symptoms being so bad; the first when I was initially diagnosed and was really ill for 2 years; the second when I suffered a massive relapse 10 years later. I got it wrong on both occasions! To be fair I got it wrong because I was ill, my symptoms made it impossible to work out what I needed to do. So with the benefit of hindsight, and being in a better place now, here’s my top 5 tips for managing your invisible illness in the workplace:

1. Know your illness

If you don’t understand it yourself then how can you explain it to anyone else? Find out absolutely everything you can about your illness. There’s so much information available these days, use the internet, chat to your doctor, go on forums, find local groups, get in contact with anyone you know who suffers with the same illness (you may not be aware you know people so you may need to ask). There are often many misconceptions around invisible illnesses so make sure you know the facts and are able to talk about them. I used to refer to my illness as “ME, that fatigue thing, I’m sure you’ve heard of it………….”. And often they had, my explanation of my illness invited them to draw on their misconceptions as I didn’t provide any further information; then the way I dismissed it invited them to dismiss it too. Now if anyone asks I say “I have Myalgic Encephalomyelitis, an illness which affects my immune and nervous system, it has many symptoms and can be crippling on a bad day although it’s pretty much invisible to everyone else. It’s also known as ME for short, have you come across it before?” It leads to a more meaningful conversation and a much better understanding!

2. Work out how your illness affects your work 

Be very honest with yourself here. Chances are there are going to be things you can’t do. Work out what they are, if you do goal setting at the beginning of the year this is a great place to start. Pull out your goals and decide what you can realistically achieve. Or a job description works well too. Don’t take on too much, be ready to say that feared word – no! I was given extra work outside of my job role and really should have made sure it was re-assigned but I didn’t. Big mistake! Whatever you do don’t feel guilty about being upfront about the effect your illness is having/will have on your work. If you broke your leg, your company wouldn’t expect you to drive. You need to treat your illness in the same way as a visible illness. Work out if there are some things you just cannot do. Do you need extra time to deliver? Do you need extra resource?   Can you stick to your working hours or do these need to be reviewed? Also have a think about how long you need these changes for, long term or short term?

3. Tell people – quickly

Now you’re armed with the facts about your illness and have an idea how you think it will affect your work it’s time to tell the right people. And tell them quickly, before it starts to affect your work and people get the wrong impression, if they don’t know you’re ill they’ll assume you just can’t do your job. As a minimum tell your manager, if there’s a HR department involve them too. If your company is big enough to have an occupational health department or medical centre then make an appointment to see them. I got the best support from our Occupational Health department, they’re there to do the best for the employee and the company but without the deadlines and responsibilities your manager has so they can be more impartial. Chances are they’ve also had experience dealing with your illness and may already have policies and procedures in place. Decide whether you want to tell everyone at the same time or if you’re more comfortable having individual meetings then get them scheduled.

4. Keep reminding them!

Ridiculous eh, you’ve gone to the trouble of doing your research, working out how it’s likely to impact your work, had the meeting and passed on this information yet still they seem to forget you’re ill! Actually, it’s not necessarily their fault. Only 7 percent of communication is verbal, so when you had your chat with your boss, the words you said possibly conflicted with what they saw (55 percent of communication of body language) and what they heard (38 percent of communication is tone of voice). If you’re anything like me you’ll psych yourself up for your meeting to tell your boss/HR/Health Dept, your body language could be defensive or very controlled and you’ll do your best to sound authoritative after all your research. It’s very possible that this will lead to a conflict of the words they hear versus what they see and hear from your body language and tone. Book in regular review points to keep your illness on their agenda and to ensure that any actions you put in place are working from both parties perspective.

5. Get yourself a support network in the workplace

OK, so we’ve told the people who need to know, hopefully managed their expectations and now have a workload we can cope with. What you need now is a support network you can trust. People you can turn to in confidence, people who will notice when you’re having a bad day (even when you’re not aware of it yourself), people who you can share your highs and lows without it impacting on your perceived professionalism. Have a think about who can do that for you. Can you meet up with them for coffee? Do you have an online chat where you can keep in touch? If not, can you use your mobiles? If there’s no-one at work, find someone outside of work who you can easily chat to during the day. Consider a mentor, someone in the organisation who is outside of your direct management structure and so doesn’t have direct responsibility for your work. My mentor was amazing, some days I would have gone completely insane if it wasn’t for my meetings with her!

Please do not be ashamed to seek the help and support you need. Why not connect with me on LinkedIn or if you suffer with ME/CFS  check out my brand new LinkedIn group which I plan to fill with lots of practical and useful advice.

One Reply to “My top 5 tips to more effectively manage your invisible illness in the workplace”

  1. Thank you Jo for your honestly and great advice!!! I will remember this for the future as I also have a hidden illness, BPPV that is little understood!! Even my own family forget I have it and my life is a daily struggle as a result of it!! Xxx

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