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More than just tired: Living and working with Fibromyalgia and Chronic Fatigue

May 12 is International Fibromyalgia (Fibro) Awareness Day, which aims to raise awareness for both Fibromyalgia and Chronic Fatigue Syndrome (CFS). Both are debilitating disorders characterised by symptoms that may not be immediately apparent to others, such as extreme tiredness, and persistent pain that doesn’t go away with rest and can’t be explained by an underlying medical condition. Project manager Linda Beck has Fibromyalgia and wanted to tell us more about how it’s affected her and what she’s done to find her feet again so that other colleagues can know how to support others, as well as ask for support if they need it.

Before I was diagnosed, I was ambitious, driven and determined to not let anything get in my way.  My mind worked at a mile-a-minute pace and I liked to be occupied with multiple diverse projects.  I worked in a male-orientated environment among some strong characters. I refused to listen to my body and ‘toughed’ out every obstacle that was put in my way to prove I was ‘man enough’ for the job. But I didn’t sleep at night, I was in constant pain, felt fatigued and suffered ‘brain fog’ on a regular basis. 

All of these symptoms were invisible to my colleagues – hence why Fibro and CFS are often referred to as hidden diseases.  My only visible symptoms were that I constantly appeared to have flu-like symptoms, and had a droopy left eyelid. My body’s response to my ‘tough it out’ approach was to make my symptoms worse, in the hope I would take notice - this is our nervous system’s natural reaction to being ignored!

Eventually, my tiredness got so bad I was going to work as normal (the outward me), but then I would be so fatigued that I did little else with my life.  My social life deteriorated to the point of non-existence and my weekends were spent trying to gather up enough energy for the next week ahead.  I became irritable, frustrated and often couldn’t remember words or important information.  I would tell people I was okay, but I wasn’t.  I didn’t know how to explain to people what was wrong with me and when I did, I got responses like ‘You don’t look ill’, ‘You just need an early night’, and ‘Never mind, you’ll be better soon’. 

After two years, to my delight, I was eventually diagnosed. I thought that now my symptoms had a name, the health professionals would be able to give me some medication or operate on me and I would be better in a matter of months.  How wrong I was!  There is no magic cure that will guarantee any kind of recovery from these conditions.

I was referred to the Persistent Physical Symptoms Service (PPSS), which is a group of NHS professionals who have studied techniques to learn to cope with long term chronic conditions.  After an eight-week group course I now have a tool kit, a support network, an acceptance of what my condition involves and, with some adjustments, I can enjoy my work and social life.

I can now talk to people about my condition and more importantly, I have a greater perception of the behaviours that led to me to becoming ill. 

I wish I could have spoken to someone earlier - much earlier - so if you think that one of your colleagues or team members is looking stressed or out of sorts, please take the time out to have a chat and a coffee. There are also Mental Health First Aiders within the UK Atkins business who are available to talk to, with more being trained up across our offices at this very moment. Often, just having a conversation can make all the difference to helping an individual cope with what they’re experiencing and get the support from others that they need in order to enjoy a positive work and home life.