Arthritis and Employment: Show Us Your Hands!

September is Arthritis Awareness Month in Canada. As part of this, I'm doing a series of posts about initiatives by different organizations. The common theme of these will be dealing with the topic of working when you live with arthritis. 

Earlier this month in Making It Work, I wrote about the Arthritis Research Centre of Canada's study of a self-management program to help people with arthritis stay employed or become employed again. Last week, in Fit for Work, I wrote about The Arthritis Society’s work to help employers develop guidelines and recommendations to accommodate employees with arthritis. Both of these programs are works in development that will lead to better conditions for those of us who live with one of the 100 different kinds of arthritis. But what might those conditions look like?

As I've shared briefly a few times, Show Us Your Hands! has spent a significant portion of this year re-examining how the Directors’ inflammatory arthritis affects how we work and developing processes to support that. In effect, Show Us Your Hands! is a case study for an organization that supports and accommodates arthritis and thereby benefits from the contributions and talents of the people involved in the organization. Today's post peeks behind the scenes to show you what we did, how we did it and what came out of it.

We started the new year by adding several new Directors to the team, then kicked it into high gear with pursuing our goal of becoming an official nonprofit. We got a bit excited and worked really hard. Then we lost one Director due to health reasons and the replacement also had to bow out for the same reason. Shortly after that, our President Eduardo Flores (a.k.a. RAGuy) experienced an intense flare that required him to step back, while he tried to find a way to deal with this disease. It became very clear that inflammatory arthritis was going to be a member of the team and that it would throw its weight around on a regular basis. We started having informal conversations about how to cover absences. This led to an official recalibration exercise in which the Board of Directors went back to the beginning and spoke very honestly about the impact inflammatory arthritis had on our lives and our abilities. 

“Earlier this year, when I had to step away from almost all of my commitments due to my health crisis, it meant the world to me to know that I had the full support and understanding of other members of the board. It made me realize that I hadn't experienced such a thing very often, and it really drove home the impact of what we are doing not only as an organization within the community, but also as a group of individuals who live with inflammatory arthritis.” (Eduardo Flores) 

The first step of our recalibration was to identify why we got involved with Show Us Your Hands! — what was it about the organization that excited and inspired us and what do we enjoy at work. Then we took a look at how inflammatory arthritis affected how we worked to better understand how to manage a team where every member lives with a chronic illness. We talked about how we reacted when flaring, other aspects of our lives that were essential and how we could prevent burnout, both psychologically and physically. 

[It was really meaningful to take] time out to think about what I wanted to achieve, what my drivers were and to understand those of my colleagues. (Sallie Ferguson) 

Once we had a deeper understanding of how our inflammatory arthritis affected us in the way we worked, we set about establishing organizational processes and structures to accommodate working with a chronic illness. We developed administrative structures to help ease workload for everyone, such as rotating the role of Chair of Board meetings and minute taking. We also have a central calendar that lists projects, project leads and deadlines to help us stay on track. This calendar incorporates an online "Break Room" where we can share aspects of our daily lives, as well as an area where we can share how our inflammatory arthritis is currently affecting us. Using cloud discussion documents keeps discussion centralized instead of cluttering up e-mail. Establishing generous deadlines — and then doubling them — helps keep us from getting overwhelmed and ensures that projects are completed without destroying our health.

We didn't stop with administrative structures, but also developed processes that support our team and builds trust, so we all feel safe in asking for help. Everyone's favorite is the buddy system. On almost every task, regardless of size, we have a lead and a secondary/buddy. This means that the majority of tasks are easier because they are shared, and that if at any time we experience a flare or aspects of our lives need our attention, someone is there to take over. 

The buddy system means  knowing that there is always looking out for me. (Cathy Kramer) 

It has been an incredibly successful experience, one that means we can support each other in ways that ensure that the people involved with Show Us Your Hands! can continue to contribute their skills and talents. Not only has our recalibration made us a better team, it has also made us a better, healthier organization.

This exercise has also had an interesting impact on our personal lives. Taking a step back and very deliberately considering how we work, how inflammatory arthritis affects our work and the role of stress management in preventing flares, has rippled into our lives in general 

I am constantly stopping and looking at what is going right and wrong in my life and trying to recalibrate.  This gave me new ways to deal with stress and most of all a reminder to stop and take care of myself first (Cathy Kramer)

It has taught me the importance of better managing my time, of better estimating the time and energy that is required to complete a commitment, and of being able to keep others updated when and if I should start falling behind, with no shame at all. This has allowed me continue to prioritize my health and my well-being above everything else, which in turn has allowed me to be not only more happy but also more productive. (Eduardo Flores)

This recalibration exercise has had a huge impact on how I think about work and stress and my RA. It, as well as the support of a team of wonderful people who have all become my friends, have helped me through some really rough times over the past 6-8 months. Thanks to what I've learned in this process about myself and about living and working with RA, I’ve come through to a better understanding of what I need to be happy at work and where it's important that I put my energy. (Lene Andersen) 

We hope that by sharing our experience, we can help inspire other organizations to recalibrate and change how they work. This can do wonders for the organization, not just in terms of helping their employees who have chronic illnesses and disabilities continue to be valuable members of the team, but can also have a beneficial effect on healthy employees. We hear so much about balancing work and life, but very few employers actually support this balance. 

Our hope is that we can be part of a movement to change that.