Navigating the workplace with a chronic illness is tricky business. When and how should you share your diagnosis with your employer and colleagues? How can you create the trusting relationship you will need with your employer to succeed at work, despite the extra challenges you face?
Twelve years ago, I was diagnosed with Parkinson’s Disease, a chronic degenerative neurological disorder with no cure. After going through the difficult process of accepting my diagnosis and looking forward, I had two goals that I believed were not contradictory: to advance in my career and to slow the progression of my Parkinson’s. While I have met both goals, it was not in the way I expected.
A friend calls me a “Pollyanna Pitbull”, due to my need to doggedly pursue my goals with a fierce determination and genuine optimism. I “own” this description of me. It fits! I strive to continue to be a Pollyanna Pitbull, despite the fact that Parkinson’s is progressive, and it is relentless. Many times, it feels like a dark cloud hanging over me as I live my life.
PD has a mind of its own and is notoriously unpredictable, from day to day but also from hour to hour. It has taught me that I am not indestructible, and it is a formidable opponent. I have become a Parkinson’s Warrior and if I do not fight this disease, I know it will shut me down.
Each person’s experience with Parkinson’s is different. For me, my symptoms can be grouped into these categories:
Dystonia: Intense muscular cramping starting in my foot and going up my leg. When it is at its maximum, I am reduced to tears, and nothing relieves the pain.
Dyskinesia: While dystonia is no fun, dyskinesia is worse and quite scary. With dyskinesia I lose control of my movements, which makes it hard to sit in a chair, hard to eat, hard to walk, and impossible to drive. It feels like my body is writhing out of control, and at its worst it is impossible for me to stay seated as my body is jerking around flopping out of the chair. I bounce off the walls, bruising myself, or spin around in circles. As if the physical side is not enough, with dyskinesia I become very moody, and I don’t feel like myself.
Emotional: For me this includes ever-present Anxiety and bouts of Depression, as well as my arch enemy: apathy.
Fatigue: Which is very intense, emanating from deep in my body. One minute I am functioning okay and the next I am down for the count; too weak to move.
Sleep disruption: A common symptom of Parkinson’s.
When I was diagnosed, I was shocked because I had always been healthy. My husband and I had our lives all planned out, and those dreams have been shattered. We have been thrust into a whole new world, a world where I need to find a new way to be.
I started with my current employer, TBD Solutions, about eight months after my first brain surgery. One thing I know for sure is that work is essential to my well-being. It is my way of staying connected to people and a broader purpose. TBD Solutions has been 100 percent with me through the brain surgeries, the recoveries from the surgeries, the difficult months that have continued after the surgeries, and with all the ups and downs that come with Parkinson’s. Aside from my family, my employer has been the most instrumental in my recovery. I am so grateful for this opportunity to work, even if it does not look like what I originally thought it would.
While I know that I am more fortunate than most in working in an environment with such a supportive work culture, the strategies I suggest below apply to any workplace and any chronic condition, not just Parkinson’s.
Choose your Attitude: For me in managing this disease, attitude counts the most. I have cheerful signs in our house that encourage me to be brave, but I do not always feel brave, and I am not always courageous. And that is OK. My goal is to do my best each day, and to accept what comes with grace. As Charles Swindoll says… “Life is 10 percent what happens to you; 90 percent how you react to it.” I know that sounds cheesy. Believe me I am not always able to see life this way, but to me framing my life from this declaration makes all the difference.
Engaging Meaningful Work as Tolerated: The key part of this process of becoming a “new me” is performing meaningful work. At the same time, it has meant accepting my nearly constant state of low energy and fatigue and listening to my body and resting when it says rest. Some doctors and even my fellow “Parkies” often say “Work it is just too much for you; you really should stop working and focus on managing your Parkinson’s.” Whether or not to work is an individual decision that each person needs to make on their own. Working can be an integral part of managing your disease and happiness if work is important to you and you have the support of your employer. Evaluate the pros and cons of continuing to work. Not everyone finds work to be essential for their mental health like I do!
Building Trust: Once you arrive at a decision to work, focus on building trust with your employer by having a candid discussion about your goals, limitations, and the support you will need from them to remain in the workplace. Help them understand your illness by sharing information at the level you are comfortable. Confirm that even with a chronic medical condition, you can be “value added.” Nurture a trusting relationship with your employer over time by being open with how you are doing and asking for feedback regarding your performance.
Using Coping Strategies: One coping strategy that works for me involves spoons, and this “spoon method” can work for anyone who has limited energy. It involves roughly scoping out your day, and realizing you only have a limited number of spoons/energy and allocating your spoons intentionally to things that are most important. I only have about five or six hours each day where I have some energy, so this spoon method is something that is commonly understood with my employer. This is “lingo” that we both use. For example: I do not have the spoons to work on this today; could I postpone until tomorrow?”
Transparency: I am learning to open myself to feeling vulnerable and admitting that I can’t do everything and that sometimes I just don’t feel well. This was one of the hardest things for me to do, but once I got past that wall, the rewards are many. Do not try to hide your symptoms. For me, sometimes in meetings I become dyskinetic and squirmy. If I am feeling self-conscious about it, I often explain to the group that I have Parkinson’s, and this is a symptom that I am managing. Without exception people have been understanding and supportive. After sharing, I can relax and not be as self-conscious.
Make Specific and Reasonable Requests for help: It is human nature for people to want to help but they’re not always sure how. For many of us it is uncomfortable to ask for what we need. Consider this: It is a gift to them to be specific when asking for help. Ask! Believe me, it is much harder for your colleagues to support you when you just say, “I don’t feel well today.” Instead, add on: “I need you to cover this meeting.” It’s also important to ensure that your requests are reasonable and not jeopardizing your relationships with colleagues or their ability to perform their job.
Be realistic: As tempting as it is, do not exaggerate about what you can do; that sets you up for much consternation and it could break the trust between you and your employer over time. At the same time, do not underestimate the contribution you can make. Realize you may end up doing different things than you originally planned. For me, I had to consider the alternative to spending time grieving the things I can no longer do. I opened myself to adaptations to these goals and new ways to find meaning in my work.
Open Communication: Be sure to have a two-way verbal agreement with your employer: a promise that you will tell your employer when you can no longer work and a mutual commitment from your employer to provide honest feedback about your ability to perform the job. Touch base on a regular basis to have an open conversation about this.
In conclusion, my underlying goal used to be to beat PD into submission, but now my goal is to work with it productively and harmoniously so that I can live my new life. The choice is not binary – Parkinson’s or happiness. I choose to be as happy as I can WITH Parkinson’s. And for me, working in a job that is fulfilling is a key part of that happiness.
Miserandino, C. (unknown) The Spoon Theory Retrieved from https://butyoudonlooksick.com/articles/written-by-christine/the-spoon-theory/
Swindoll, C. (unknown) Attitude Retrieved from https://www.inspirationalstories.com/quotes/t/charles-swindoll-on-attitutde/