Authors
Meghan Beier , Neuropsychologist
Tips for Disclosing Your MS to Your Employer (or Not!)
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9 Apr 2024 | ~10:00 Engagement Time
Special thanks to our sponsors, Viatris & EMD Serono.
Yes, you can continue working with MS. This is a common question that arises for many. Often, a job is a part of who you are, how you take care of your family, or something you spent years – even decades – to build. Therefore, when MS starts affecting your ability to work, it can bring with it a wave of fear, frustration, and grief.
However, there are strategies for managing MS symptoms at work and helpful ways to plan for the future. This could mean requesting accommodations from your employer, making adaptations to your current role, adjusting your work pace, or planning for a future with potential and purpose.
Unfortunately, MS can have an unwanted impact on your career. Studies have shown that, within 10 years of an MS diagnosis, about 50% of people cut down their work hours or stop working altogether.
However, the future of working with MS is looking hopeful. This is thanks to more effective MS DMTs, an increased number of flexible jobs, the provisions of the Americans with Disabilities Act (ADA) and a growing societal push to support individuals with disabilities at work.
Even with these positive changes, it’s important to have a solid plan in place. Below are some proactive strategies you can use to understand your rights at work, build a supportive team of professionals, and prepare for whatever comes your way.
Yes, MS is considered a disability. Both the ADA and Social Security Administration (SSA) recognize multiple sclerosis as a chronic illness or impairment that can cause disability severe enough to require accommodation or prevent an individual from working.
Employers in the United States are required by the ADA to provide reasonable accommodations to qualified applicants with disabilities who want to apply for employment. Employers with 15 or more employees are also required to provide reasonable accommodations to their employees with disabilities to ensure that those employees can carry out their responsibilities as effectively and comfortably as possible.
To request MS disability accommodation from your employer, you will need to disclose that you have a disability. Although the law does not require that you disclose your specific diagnosis, it may eventually become necessary to say that you have MS, if asked. The decision to disclose your disability is a very personal one, which requires careful thought and attention to the pros and cons of making this information public. For help with this important decision, visit the National MS Society’s (NMSS) Disclosure Decision Tool.
Once you have made the decision to disclose to your employer, check out the NMSS Win-Win Approach to Requesting Accommodations in the Workplace. The Win-Win approach focuses on the importance of conveying to your employer the benefits they will derive from providing you the support to perform optimally. In other words, you both will benefit. The goal is to approach your employer with an accommodation request before your challenges are noticed by others or you receive a negative performance review. Being proactive sends a clear message that you want to be an effective and productive employee.
The Job Accommodation Network (JAN) is your best resource for information about reasonable accommodations when working with MS – how they are defined, how to figure out which accommodation(s) will help you the most, and how to request them. Their specialists are available to consult with you about your needs.
Multiple sclerosis disability plans can provide financial support for relapse recovery (a short-term plan), intensive rehabilitation (a long-term plan) as well as retirement options. Familiarize yourself with what your specific employer offers. While there are variations in long-term disability insurance plans, often private insurance plans will encourage or require you to apply for Social Security Disability after a designated amount of time.
Once you are familiar with what your employer offers, determine whether your work history and earnings to-date meet the requirements for Social Security Disability Insurance (SSDI). This could influence your decision to stick with your current job, consider switching jobs, or explore other options. Take, for example, someone who stopped working for several years to be a stay-at-home parent, they might not be eligible for SSDI unless they’ve made a certain amount of money working outside the home or have worked for at least 5 out of the last 10 years.
If you need to stop working permanently, the application for Society Security Disability Insurance (SSDI) benefits can take months, sometimes years, to get approval (much less, however, if you work with a disability attorney).
Having some money saved up can give you a sense of safety and stability while you wait. If you are fortunate enough to have an employer-based disability policy, you will receive income from that policy until you reach the eligibility age for Society Security benefits. However, private disability coverage is virtually impossible to get once you have an MS diagnosis, so it may be in your best interest to look into this insurance even before your diagnosis is confirmed. It’s also a good idea to seek information proactively from a disability attorney on how disability benefits work, including the process of applying and the wait times involved. If you think you will need to rely on SSDI benefits, it’s important to plan ahead.
Whether or not working with MS is impacting your career, it’s helpful to prepare accordingly with your MS care team. If your team isn’t already doing so, ask them to record things such as changes in your walking speed, dexterity (hand function), and cognition at your regular check-ups – ideally once or twice a year.
This information helps you and your providers in two ways: First, it can help your MS provider decide whether you might benefit from seeing specialists who can help you maintain or improve skills that you likely need to maintain your job. Second, keeping track of your symptom progression can help your MS provider submit an effective SSDI application on your behalf. The details in your medical record can provide proof of how your abilities have changed because of MS as well as how they are impacting your work performance.
It is never too early to form relationships with important professionals who can support you in navigating any challenges you may face while working with MS. Your rehabilitation team can help you manage your physical and cognitive symptoms and optimize your performance at work. Financial advisors, disability attorneys, the Job Accommodation Network, and the Social Security Administration can help you manage financial planning, disability insurance and creating an optimal work environment.
In addition, every state has a vocational rehabilitation agency whose counselors can assist you in navigating your current job or suggest new roles that accommodate your MS. The Job Accommodation Network lists these departments nationwide.
Your goal is to form good working relationships with professionals who can help you work with MS productively for as long as possible, plan for your financial security, and navigate retirement from the workforce when you need or want to do so.
For many, your job is more than just a paycheck; it’s part of your identity. The thought that your health might one day affect your ability to work can be frightening and overwhelming. It’s natural to want to avoid thinking about such things and to keep going as if everything will stay the same. Yet, despite the tough emotions, proactively learning and lining up support now will help you feel secure no matter what comes. It’s about laying the groundwork for a future so you can navigate changes with confidence and maintain control over your life’s direction.
