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Often times when we talk about managing life with multiple sclerosis, we focus on the things that can help our quality of life such as diet, exercise, minimizing stress, regular neurologist visits, and disease-modifying therapies. In an ideal world, we would be able to focus 100 percent of time on our health, wellbeing, and managing our quality of life with MS. The problem is that nearly half of the people living with MS still work full-time. 

A 2010 population study in Norway looked at people living with MS and employment and found that 45 percent of the people polled had full-time or part-time employment. The study also showed that patients with relapsing-remitting MS had a higher employment rate than patients with secondary and primary progressive. Some other factors that affected employment included: higher education level, younger age at diagnosis, less time being diagnosed with the disease, less disability, and less fatigue. 

There are also many driving factors to stay employed with MS, even if you are fatigued and have some disability. These factors include cost of living, health insurance, medical expenses, transportation, and housing. Life has become more expensive than ever before. Grocery and gas bills have doubled during the past year along with everything else putting intense pressure on people to earn more to maintain their quality of life. These factors are forcing those with MS who can work to continue working. There is also a pressure to perform at a higher level at work to earn a raise or promotion to deal with inflation. 

The new remote working world has also added an addition pressure on employees to prove their value.  A 2021 workplace study revealed that 55 percent of remote workers put in more hours at home than they do in the office. So, even in a workplace environment that may be more conducive to someone living with a disability by working at home, the pressure to work more to prove they are busy and productive can create more stress and pressure than going into an office. Whether you work from home or in an office, you are going to have stress and pressure to perform.

We know that stress is not good for someone living with MS, however, stress exists in every workplace in some capacity. So, how do you manage your MS while working in a fast-paced, stressful environment?

* Keep a work journal of tasks, due dates, and deliverables. A big stressor for people living with MS in the workplace is forgetting what they have due. If you have MS and cognitive deficits, it may be impossible to remember a conversation you had with a coworker that resulted in an action item or deliverable. Write it down in a journal, not on the computer, and keep that journal with you. It is too easy to forget a note on a computer, but having it journaled in a notebook can keep you organized, on track, and on task.

* Establish workplace boundaries. Let’s face it, in the digital world we are all available 24/7. We all have email on our phones, text, and chat programs. These programs make us accessible to coworkers even when we’re off the clock. Even though we are technically always accessible, it is healthy to have boundaries. If you get an email or chat after hours, answer it the next day during business hours. We all need downtime time to rest and recharge, make sure to set those boundaries and stick to them so you get the downtime you need.

* Talk to your supervisor about your condition. Health and productivity go hand in hand. If you have an MS flare up then you will most likely be unable to work or at least less productive at work. While these conversations can be tough to have, it is important at some point to let your supervisor know about your condition. Remember, you are a protective class of employee under the law, so it is okay to talk to your supervisor if you choose to. You can also ask for accommodations if necessary. For me, I typically wait until I have proven myself before I have this conversation. That way my supervisor knows the quality of work I produce before having this conversation, but it doesn’t matter when the conversation occurs. You will know when it is the right time to have this conversation.

* Get up and get moving. Like stress, sitting and staying sedentary is the enemy of MS. Once an hour, stand up and stretch or go for a short walk. I even have a coworker that does line dancing moves a couple of times a day at her desk. Whatever motivates you to keep moving while working is what you need to do and you will notice a big difference in how you feel at the end of the work day.

* Get behavioral health support if needed. Your workplace should have support, whether it is through HR or an outside company, there should be resources you can reach out provided by your employer to find the help you need to stay emotionally healthy.