Monday, October 7, 2019

Supporting #ArthritisAtWork

One of the more stressful aspects of living with arthritis can often be figuring out how to manage arthritis and daily life at the same time. For me, this issue has appeared mostly when it comes to motherhood - which is why I started Mamas Facing Forward.

But for those who work outside the home, there's also the issue of how to manage arthritis in the workplace - such as figuring out what adaptations might be necessary, deciding when to reveal your arthritis to your boss or co-workers, or making sure you understand your workplace rights.

Laurie Proulx has lived with Juvenile Rheumatoid Arthritis for 28 years and it is her experiences that led her to the Canadian Arthritis Patient Alliance (CAPA) where she advocates for increased arthritis awareness and the adoption of more inclusive, patient-centred policies and practices. She is currently a Board Member and 2nd Vice-President with CAPA and has been actively involved in the organization for over 10 years. In this role, she represents the patient voice on various health policy issues, led a project on pregnancy and parenting with arthritis and arthritis in the workplace, and works as a patient partner in research. Laurie lives in Ottawa with her husband and two children.. Here, she shares the experiences that led her to the development of the Canadian Arthritis Patient Alliance (CAPA) workplace resources you'll find below:

I’ve lived with rheumatoid arthritis since childhood so I know all too well how this disease affects every aspect of life. I had difficulties in school, it affected my family, and it influenced my career choices and participation at work. Early in my career, I pushed myself to ‘fit into’ the workplace but looking back, I know it negatively affected my health. I never spoke about arthritis with my employer until I had children - I couldn’t manage the disease with all of life’s new responsibilities as a parent.
I knew that if I was having difficulties at work, others were too. I volunteer with the Canadian Arthritis Patient Alliance (CAPA) and I pitched the idea for a workplace project to our Board of Directors who all live with arthritis. They were overwhelmingly supportive – many on our Board have struggled to stay employed and healthy.

The first step of the project was to launch a survey to better understand the workplace challenges of people living with arthritis and what they’ve done to stay in the workplace (you can view a poster on the results here). Unsurprisingly, 85% of people with arthritis reported that arthritis affects them in the workplace. Some of their key challenges were that work takes them away from life activities, and they have difficulties in staying focused due to fatigue. People were also asked what worked for them and how effective personal and workplace adaptations work them. These survey results informed the development of workplace resources to help people with arthritis at work. The workplace resources were reviewed by Dr. Arif Jetha, a Scientist at the Institute for Work and Health in Toronto, Canada who studies how to support people with disabilities in the workplace. 

The workplace resources are organized into four different modules:
  1. Self-care for work - it describes how you can adjust non-work activities and manage your arthritis to better participate at work.
  2. Adapting the work environment for arthritis - it describes common workplace challenges and helpful workplace accomodations.
  3. Knowing your workplace rights - it describes the laws in Canada to accomodate people with disabilities at work. Although this information is specific to Canada, you can check out a disclosure checklist on page 3 to guide you in deciding whether to disclose information about arthritis to your employer.
  4. Workplace wisdom from patients (infographic) - this is a crowd sourced solution based on the advice provided by close to 400 people living with arthritis.

The project isn’t over either – CAPA is hosting a Twitter Chat
on #arthritisatwork on World Arthritis Day. 
The Twitter Chat will be on October 12 at 1 p.m. Eastern. 
We hope to see you there!