The Unexpected Consequences I Faced After Returning to Work With Fibromyalgia

Last year I had to enter the work force – after an absence of 15 years. I had updated my skills the year before with study and I knew it wouldn’t be easy. So, as someone that had battled with fibromyalgia for 20 years already, I knew working even part-time would be extremely difficult.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

The only way to really cope with my symptoms is to pace myself, and I knew going to work would mean going “flat out” all the time – the opposite of pacing myself. Even though my doctors had said I was too sick to work, in order to be eligible for welfare payments I had to “prove” I couldn’t work by going to work and not being able to do it. So I went into work knowing it would cause me a relapse. I just didn’t know how long it would take for my body to crack under the physical pressure.

My employer was made aware of my illness and limitations before commencement of employment. They promised to work with me and my disability. I had high expectations.

I expected my body to be in horrific pain. I expected to have unbearable fatigue. I expected to have extensive brain fog and bad days. Boy did I get them.

I didn’t expect to be so proud of the work I did, or so happy to be out of the house and a “productive member of society.” I didn’t expect to enjoy the camaraderie of the people I worked with.

I certainly didn’t expect to feel my chest swell with pride each time my paycheck was banked and an absurd feeling that, at age 36, I had finally become a “responsible working adult” as opposed to a “drain on society.”

What I didn’t expect was for my anxiety to skyrocket.

Since early childhood I have dealt with severe anxiety, with no help from the medical community. I use all the mindfulness tricks I know, calming techniques and so on but mostly I put my head down and grimly work my way through it. It’s torture. It wasn’t the work itself that caused the anxiety. It was the slow pushing from management to increase both my hours and my workload.

Even as I was slowing due to my natural fatigue, they were trying to increase my hours and workload. My one-day-a-week job quickly turned into two, then three and even four days a week. In part, my own enthusiasm to be there was used as a weapon against me. The insecurity of casual work made me afraid to say “no.” I fell into the trap of being “needed.” It was only three months before my health started to slide.

Instead of doing less, I was asked to do more. And more. And more.

I was suddenly drowning – taking my work home at night because I’d had brain fog all day. I felt I “owed them” better work. This stole time I desperately needed to rest and recuperate for the next day. I was losing files, phones by the handful (at my expense) and catching every germ in the office. I was worrying incessantly. I was upset at night that I hadn’t completed my workload. I started to dream that I was missing deadlines. The first sign of relapse for me began. My body stopped sleeping as massive leg cramps set in. I pushed on. In some misplaced way, I felt I owed my employer. I think I felt I owed them a healthy employee: something I could never be. Guilt drove me.

For three more months I struggled on like this. I asked for help several times and was assured management would address my concerns and help spread my workload. They didn’t. The harder I tried, the more energy I expended, the sicker I got. I was told my workload would be doubled in December with no extra hours and no extra pay. I broke down. I was told to take the day off. Things got nasty. At the six-month mark I was “let go.”

At first it was such a relief – I could stop freaking out about everything. The pressure was off, I would be OK. I would bounce back quickly – so I thought. I expected things to go back to normal. They didn’t. Foolishly, I had in my head that I would be well after six to 12 weeks of rest. What a joke. Ten months on and I can nearly walk to the shop a quarter mile away – once a week. Only now can I start to sleep without leg cramps every single night.

My recovery is painfully slow. I have done this twice before – clawed my way from bed-bound back to “the land of the living.” Then I can drive a little and shop for groceries and do some light housework. I’m not there yet. But I am getting a little bit closer every week.

I didn’t expect my employer to disregard my best interests so quickly. I mean, I knew I would have to push myself physically. Almost having a complete physical and mental breakdown was never part of the plan. But it happened.

As a society, “doing our best” has turned into giving too much and working until we have some kind of burnout or breakdown. That’s dangerous for anybody, let alone those who struggle with chronic illness.

I didn’t expect the support of my partner, friends and family to be so warm and so all-encompassing as I tried to achieve a dream. I didn’t expect the 10 months of post-job anxiety and depression I have had to deal with after I was fired. I certainly didn’t expect to mourn my feelings of usefulness, to be plagued with confusion, guilt, shame, hopelessness and huge anxiety attacks for the next six months. These feelings are improving now, but it has taken a long time.

I also didn’t expect the “small relapse” to last one to two years. It did, however, convince those in power that I am “disabled enough” to be granted a Disability Pension. I only had to make myself incredibly ill for two and a half years for them to believe me.

I did learn that I am much stronger than I give myself credit for. I have learned that I should have set much stronger boundaries and worked with my body rather than in spite of it. This morning, after all the months of doubt that I was ever “good at my job to begin with” – a question that has honestly haunted me – my former employer rang and asked if I would return to work.

I honestly wasn’t sure whether to laugh or cry. It just goes to show, maybe I did a better job than I gave myself credit for.

So if you’ve tried to go back to work and feel like you failed abysmally, like I felt I did, then I hope you realize how amazing you are for trying. Any guilt you carry is too heavy a burden. Put it down. I know I am putting my burden of guilt to rest today.

Oh and the job offer this morning?

I very politely declined.

For health reasons, you know.