“Without fear and illness, I could never have accomplished all I have.” ~ Edvard Munch
Can we work when we have MS? That is not a question that can always be answered with a simple yes or no. Just as MS affects everyone in a unique way, working with MS often means approaching your work life in unique ways. When we are newly diagnosed with MS, we are likely to have concerns about how the disease might affect our work, how our employer will react to the news that they have MS and what will happen in the future.
Many people living with MS often continue working long after diagnosis. (I myself continue to work full-time…but with accommodation.) Some people with MS decide to leave their jobs when they are first diagnosed or experience their first major exacerbation, or maybe at the suggestion of their family, or in consultation with their doctor. But, frankly, it seems like this decision is often made too quickly. Often, the decision is made at a time when symptoms can color judgment, due to confusion, grief, fear, or a sense of desperate resignation. But there are many resources and disease management methods that can help us remain in the workforce. It takes a bit of personal assessment, honest self-evaluation, and some patience, but it can be achieved.
Often, the biggest question is whether or not to disclose about MS at all. We do not have to disclose. So why disclose? Or conversely, why not disclose? Often, it is because of the stigma that can accompany such a revelation that we do not want to disclose. Unless your MS comes with a very visible manifestation of symptoms, it is basically invisible to those around us. That invisibility can lead to misunderstanding of the reality of MS. For example, if someone breaks their leg…it is seen, understood, and known that it needs some form of treatment or accommodation. Not so much with an invisible illness. Take the fatigue of MS, for example – it can be absolutely debilitating, and means one literally cannot think, and that symptoms are flaring all around. treating that fatigue means resting. THAT is the part many colleagues and managers may not grasp. Resting for MS fatigue is not laziness – but the stigma of laziness can accompany the need for rest. Disclosing can be a double-edged sword.
One thing I do know is that disclosing is one of the first steps to enable accommodation at work. Accommodation can take the form of reduced duties, new duties, flexible work hours, or even teleworking. But…each situation is unique and take serious personal thought.
Perseverance is the hard work you do after you get tired of doing the hard work you already did. ~Newt Gingrich
There are many resources on-line to give food for thought about MS and work. Here are a just a few for consideration:
MS and Work
- Telling your Employer
- Working from Home: Dream or Dread?
- At Work with MS
- MS Lifelines: Making it Work