What It’s Like Working With Fibromyalgia


Fibromyalgia and Work

Working With FibromyalgiaEveryone’s fibromyalgia is different. Some of you will be working full-time, others part-time, and others will have stopped working altogether. Then there will be those who are full-time parents and those who are self-employed, but whatever type of work you’re doing there are ways to make it easier on yourself.

I’m particularly bad at following my own advice when it comes to work vs. health. I always put the needs of my employer before my own and I give work everything I have — and then I give it some more.

So how about we make a deal? If you start following some of my advice, I will too.

Find a Good Employer

This, above all else, is the most important thing for someone working with fibromyalgia. You need to make sure you work for a company that values its employees’ health and well-being.

But how do you know how good they are until you’re in the door? Well, here are some things to look out for.

  • Check out their health and well-being policy. If they don’t have one, get outta there! If they do, ensure it includes an employee assistance program and practical examples of how they support mental and physical health needs. You’re looking for an employer with good values at the heart of the organization.
  • Look for a flex-time policy, as opposed to a flexible working policy. Flexible working is the law in the U.K. but requires you to justify your requirements and only provides adjustments “within reason.” Flex-time shows you that the employer is flexible and will allow you to work around your commitments — as long as you’re doing your hours.
  • Good annual leave and sick pay should also be considered. My current employer gives extra annual leave to people who go a year with no sick leave. This tells me that as an employer, they have no awareness of people with long-term health conditions. They are rewarding those who don’t have chronic health issues and are suggesting we as sick people have some control about whether or not we can make it in to work.
  • Look out for campaigns or initiatives the employer has been involved in. The ‘about us’ or ‘news’ section of their website will list these. Business in the Community (a U.K. charity supported by Prince Charles) has recently launched the Workwell campaign to encourage employers and employees to be more open about coping with health conditions in the workplace. Participation in these kinds of initiatives speaks volumes.

Take Control

You need a good employer, but you also need to be a good employee. With a condition like fibromyalgia, people rarely know when you’re struggling unless you tell them.

While the employer needs to create a culture and environment where people can be honest about the challenges they face, you need to embrace that culture and take control.

When you join a new workplace you should take control of your condition and explain to your manager what you need. Don’t lift the box if you can’t, don’t use the keyboard you’re given if you can’t, don’t work the late shift if you can’t.

At work I use a split keyboard and vertical mouse because these things make it a bit easier for me at my desk. My colleague, who suffers from chronic back pain, has a fancy chair with built-in lumbar support. Ask for these things and make sure people know you need that extra help.

Next page: telling people, making a health drawer, and choosing practical work-wear.

Tell People

It’s not just about the extra equipment and talking to your manager, it’s also about telling your colleagues so people can offer you extra support. I went on an overnight trip with colleagues last week and because they all know about my fibromyalgia, they offered to carry my wheeled-suitcase every time we got to some stairs. It was wonderful and made a huge difference in my ability to cope.

I once told my boss about my condition and she asked me, quite simply, “What are the things you struggle with?” I talked her through the daily difficulties, one of which was the walk from the overflow car park to the office.

The next day she came up to me and told me she had picked me up a pass for a disabled parking space right outside the front door. That is a boss who goes the extra mile, but it relied on me being honest and telling her.

Make a Health Drawer

My top drawer at work used to include pens, a calculator, a notebook and other various work-related papers. I recently moved everything down to the second drawer and my top drawer became my health drawer. If you don’t work at a desk, perhaps you could create something similar like a shoebox in your locker.

My health drawer includes:

  • A hot water bottle
  • A herbal heat pack
  • Pain killers
  • Arthritis gloves (excellent support for typing when your hands are cold/sore)
  • A silk scarf (wonderful for keeping me feeling soothed when my neck is sore)
  • Pernaton gel

What would you put in yours?

Find Practical Work-Wear

Often our work dictates what kind of thing we have to wear or what equipment we have to use. However, be sensible with everything you have control over. I know I have to wear professional office clothing, but there’s no way I can strut around in pencil skirts and three-inch heels (that actually has nothing to do with fibromyalgia for me — I’m just not one of those women).

Instead I make sure I’m smart and professional — and a little bit trendy at times! — but I invest in good, smart work clothing that is practical for what I need.

Other practical work-wear tips include:

  • Buy comfortable shoes. They’re often more expensive but they’ll last and your body will thank you for it.
  • Wear layers. It helps to cope with changes in temperature which may impact your flare-ups.
  • Use a backpack for work. You can find some good smart ones and it helps to spread the weight — even though I’d much rather use an over-shoulder bag that looks much better!
  • Buy your own stationery if work won’t let you choose. My employer provides me with a hardback A4 notebook but it’s heavy and awkward so I’ve replaced it with my own A5 softback notebook.

These little things make it easier for me to cope throughout the working day.

If you’re self-employed or a stay-at-home parent then many of these tips won’t seem as relevant. However, the same message applies. Think about the things you have control over and implement changes to make your life easier.

In particular, make sure you have a good support network that can step in when you need some extra help and take control of your condition. When it comes to work vs health, health should always win.

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