Employment with MS: A Guide to Staying at Work and Transitioning in Your Career
MS often leads to changes in mood, cognition, and physical functioning, which can have a profound effect on your employment, vocation, and finances.
This article provides tips for:
- Proactive financial and vocational planning
- Job accommodations and ways to maintain working even with symptoms
- When and how to transition out of the workplace
- Tips for going on disability
Does Having MS Mean I Can’t Work?
Historical data tells us that up to two-thirds of people with MS were leaving their jobs within 15 years of diagnosis. However, this number is dropping as more effective medications come to market. The risk of losing your job due to MS symptoms has decreased by 43% since the introduction of high efficacy disease-modifying treatments.
Employment is not only beneficial financially, but also is associated with better mood and overall higher quality of life.
So, what leads to people leaving their jobs? Often, someone’s decision will be affected by what type of MS they have and what type of job they work. When it comes to the decision to stay, find accommodation, change jobs, or leave altogether, it may be because of:
- Cognitive symptoms
- Physical symptoms, like changes in mobility or dexterity
- Severe or chronic fatigue
Interestingly, in one study fatigue was the #1 reason people decided to leave their job or reduce work hours.
I Feel Fine Working Right Now. What About the Future?
Proactive planning helps put you in control of your future. You can explore possibilities for financial planning, get help, and seek advice. If you have recently been diagnosed, or do not have symptoms that are negatively impacting your job, think about taking a few proactive steps.
- Work with a financial planner to start saving money into a “rainy day” account or retirement account.
Health Insurance and Disability Benefits
- Make sure you have short-term and long-term disability benefits. This is important coverage in case you need to take off time during a relapse, for rehabilitation, or any long-term issues that prevent you from working.
- Take control of your health and try to minimize co-morbid conditions by working with your primary care provider, eating well, and exercising regularly. This may be helpful with your insurance costs.
- See where your career fits into the balance of your life. If work is at the core of your identity, take time to reflect on what meaning your job brings you and how you can nurture that outside of work. If you love working as a nurse because you get to help people, think about ways to fulfill on that value in other capacities. Down the road, this exercise can be critical for a smooth transition into a new job or out of the workplace.
- Additionally, be sure to find ways to round out life with socializing, family time, hobbies, and activities that bring you meaning outside of your career.
I’m Already Having Trouble at Work…Now What?
If MS has already started to impact your career, there are still several things you can do to protect your job and address your symptoms.
- Work with your neurologist or a rehabilitation professional on getting workplace accommodations. Accommodations can be a simple as wearing noise-canceling headphones to decrease distractions. They can include talk-to-text technology for changes in dexterity or to capture the content of meetings. Check out the Job Accommodation Network (askJAN.org) for more ideas and information.
- Use FMLA, short-term disability, or long-term disability to take time off of work to participate in intensive rehabilitation. Working with a comprehensive rehabilitation team can help improve symptoms or provide you with tools to compensate for challenges. If there is not a comprehensive team near you, look for programs that allow for out-of-town participation. A few examples include: Shepherd Wellness Program, Craig Hospital, or Kennedy Krieger.
- Start to explore careers that might accommodate your needs. This might include learning from individuals that have successfully transitioned careers. Explore resources such as Chronically Capable to find more flexible careers and employers.
I’ve Tried It All and I Don’t Think I Can Keep Working
If you’ve tried accommodations, rehabilitation, and even changing jobs and you are still struggling, it may be time to consider retirement or pursuing social security disability.
Here is what to expect and how to prepare if you decide to go on disability:
- Applying for disability is a long process. It can take 6 to 24 months.
- Try not to wait until a crisis to pursue disability.
- If you have made efforts to keep your job, document them. Keep a folder with performance reviews, requests for accommodations, time off from work for medical symptoms, and emails or messages that could document how your symptoms are influencing your work.
- Work with your medical team to document your symptoms. Ask for assessments, such as a neuropsychological exam, to objectively demonstrate changes in cognition.
- Call a disability attorney for a free consultation.
I Want to Transition in My Career. What Should I Expect?
Fighting the Negative Emotions
Leaving your job, changing careers, or even asking for accommodations can be tough decisions, fraught with uncertainty, grief, loss, and unhelpful thoughts.
Take time to examine your thoughts and emotions. If you’re struggling, consider talking with a mental health provider to challenge self-defeating thoughts and manage uncertainty. Rehabilitation psychologists and health psychologists are specifically trained to help individuals living with chronic medical conditions like MS and the challenges they may pose.
Building Your New Routine
If you leave your job, make sure to create your own structure to support your emotional, cognitive, and physical health.
Here are a few ways to get started:
- Structure your day. Identify a wake-up time, get dressed, and make a schedule for the day.
- Exercise your brain. Engage in activities that keep you thinking. This might include watching a documentary and discussing it with your friends or spouse, joining a book club, going to a museum, doing brain games, or trying free classes at your local library.
- Exercise your body. Continue to stay moving in any way you can. That might mean getting outside, trying a few new exercises, gardening, or practicing MS-adapted yoga. You can always work with a rehabilitation professional to find the right activity for you.
- Continue to find and engage in meaningful activities. It’s so important that you nurture your sense of purpose. If it feeds your soul, even the smallest activity will make a big difference in your happiness.