Me and my work
Co-created by Dr. Henry Averns (Consultant Rheumatologist) and Dawn Richards (Volunteer, Vice President, Canadian Arthritis Patient Alliance)
Finding the courage to talk about RA with your employer.
Ok, so, summer is just wrapping up and the warmth and bright sun will soon be behind us! But, what about the dark days that lie ahead, when I struggle to get to work because I wake up feeling exhausted, in excruciating pain and with stiff joints. I dread those days - knowing that getting to work is a chore in itself.
When I first told my work colleagues I had been diagnosed with RA, it took some time for them to get used to the overwhelming, and sometimes surprising, challenges having a job presented for me. I feel that I’m now in a good place, but it’s been tough getting here. Everyone is different, and the level of job accommodation required will vary depending on the type of work you do.
When I was diagnosed, I decided that I definitely wanted to keep working for as long as I could. But I can’t pretend it’s been easy. Sometimes I get such bad flares I can’t get out of bed. It was on days like these that my boss and colleagues definitely noticed I was struggling. But they didn’t quite understand why.
Gradually, I could tell they were taking pieces of work away from me with no real explanation and with no discussion about it. Colleagues would also make comments about my tiredness or about having so many medical appointments.
People knew I had RA, but nobody really understood what this meant. It was very clear that they were getting concerned that I wasn’t performing as well as I had previously. I definitely wasn’t progressing at work and was actually being held back, which really got me down and made me feel like a failure.
I needed to do something, or RA was going to take yet another important part of my life away from me. I didn’t want to feel powerless at work just because of my RA. I’m stronger than that. There are some things in life that you can’t help, and some things you can. I needed to own this problem and find a way to make life at work better for me.
So, one day when I was feeling particularly like wonder woman I went to my manager and explained what having RA was ACTUALLY like - the inflamed, painful, stiff joints, the fatigue, the exertion needed to walk up the stairs, the flare-ups but also the lack of understanding and workplace reluctance to understanding the adjustments I needed. To my surprise, she was incredibly sympathetic and apologetic that she had never really taken the time to understand my RA.
Together we planned out how I could still progress in my career, have responsibility but with more flexibility on the demands and deadlines. My employer also made sure I had an ergonomically designed desk and work space carefully planned in consultation with my occupational therapist. This small change to my working environment has already started to have a positive effect on how I feel at work.
Do you ever get the feeling that something you’ve done has made a huge impact on your life? Well that was one of those days for me – and I’m so thankful that I had the courage to do it.
As a physician, I can safely say that your doctor will be supportive of you remaining in work, but if you do require a reduction in hours, he or she is also able to provide the appropriate written documents to share with your employer.
If your symptoms become particularly overwhelming, they will also be able to help you take time off. I would always advise you to be wary of making a permanent career change/reduction in hours in the first six months after your diagnosis. Take the time to deal with your RA before seeking changes at work.