Life with MS

                         
The decision to leave the workforce, for any reason, is always stressful. The decision to leave the workforce because of disability can be particularly difficult and is often associated with feelings of loss and fear of the unknown. Work is an important part of one’s identity. In addition to economic security, work provides structure and routine, motivation, and a sense of belonging. Work is also an important contributor to physical and mental health and quality of life. For individuals diagnosed with MS, continuing employment is increasingly seen as a means of health promotion and disease management. However, the onset and progression of MS can make continuing to work increasingly
difficult.

About 80 percent of Americans with MS are working at diagnosis, and while most do not want to stop working, the majority disengage from the workforce before retirement age. Unfortunately, the decision to leave work is often made early in the disease course, in the absence of an informed decision-making process, and at a time when the diagnosis and experience of symptoms may overwhelm and overshadow one’s beliefs about their ability to maintain employment. The majority of unemployed people with MS (up to 80 percent in some studies) made a choice to leave work. For many people, this is the right decision. However, once they have stopped working, more than 80 percent believe that they are still able to work, and about 75 percent of unemployed people with MS would like to return to work. In other words, many experienced and productive workers stop working prematurely and then find themselves regretting the decision. These data highlight the importance of making thoughtful and well-informed career decisions.

What are the signals that it’s time to consider leaving the workforce?

One of the first steps in considering the decision to leave the workforce should be to remind yourself that the choice is yours and yours alone. It is wise to get opinions and consult close friends, family members, significant others, and your healthcare professionals. Still at the end of the day it is your body, your mind, and your job, and you will know better than anybody else when and if it is time for you to stop working. In this article, it is emphasized that (1) work can be an important contributor to health and well- being, and (2) there are supports available to help people with MS stay employed. However, there is also a right time to stop working. Every individual is unique, and there is no advice about stopping employment that applies to everyone. Generally, however, if rather than promoting your health and well-being your work is putting your mental and physical health, your quality of life, and the relationships you value at risk, it may be time to consider reducing your workload, changing jobs, or leaving employment.

MS-related fatigue is one of the main reasons people give for having left the workforce. In our research, we often hear people with MS say that their fatigue makes them feel like all they do is work and sleep. The long-term consequences to health and relationships of maintaining this sort of existence may not be worth the benefits of maintaining employment. People are also often concerned that their cognitive or physical symptoms may be putting themselves or others at risk. Those with positions of responsibility for others may be particularly concerned about making an error that negatively affects others. Workplace discrimination or negative coworker attitudes may also make the workplace a highly stressful environment and ultimately, an unhealthy place to be. If such concerns and situations arise it may be a sign that it may be time to explore your career options.

Before making any decisions, it is advisable to first speak to a professional, such as a rehabilitation counselor or career counselor, who can help you to explore your options. It is also crucial to educate yourself on the laws, services, and resources that might assist you in maintaining your employment. This may include the use of assistive technology or accommodations to your job or work environment to reduce the barriers you are experiencing. The Americans with Disabilities Act, the Family and Medical Leave Act and other legal protections may be appropriate and help you stay in the workplace.

If you have an accommodation plan in place, you and your employer both feel that you are being reasonably accommodated, but you still are unable to perform essential job functions at an adequate level, it may be time to consider retirement. However, at this stage it would be best to re- examine your job functions and limitations, and have an open dialogue with your employer to ensure that every reasonable effort has been made and all possible accommodations have been explored to overcome those limitations. It is also beneficial to explore other positions that might be available with your employer.

Rather than giving up working entirely, perhaps a career change that would enable you to continue working in a different field is an option. Again, seeking the assistance of professionals who can help you work though this process, explain your legal and professional options, and help you make an informed decision is advised.

What advance preparations should I make?
 
If you have made the definite decision to leave the workforce, it is essential to plan ahead. First, develop a realistic assessment of your financial needs and resources by itemizing your expenses, and if you are married or living with a significant other, factor in their income and expenses as well.

You may consider applying for disability benefits from the Social Security Administration. Supplemental Security Income and Social Security Disability Insurance are federal benefit programs designed to provide income to people with disabilities in the form of monthly stipends. The monthly payments can also be accompanied by health insurance coverage from Medicaid and Medicare. SSI is available to those who are too disabled to work, have limited financial resources, and limited recent work histories, while SSDI is for people with disabilities who are too disabled to work but have substantial past work histories. People with MS receive SSDI benefits more often than they receive SSI since they are likely to have a recent and extensive employment history.

The process of applying for SSDI can be time-consuming and frustrating. For most who apply for SSDI, regardless of disability type or medical condition, their initial application will be denied. If you get denied, you have the option to appeal that decision, and it is generally advised that you do so because appeals are granted at a much higher rate than original applications.

Keep in mind that in applying for SSDI, you must be able to prove that you are unable to work. Therefore, it is recommended that your doctors, and especially your neurologist, are aware in advance of your decision to apply. Your neurologist or physician can help clearly state the impact of your MS symptoms on your ability to work at a productive level. The more descriptive and detailed the medical records are, the fewer questions SSA’s disability determination unit may need to ask to evaluate your claim, and the more likely the application will be approved. It may be beneficial to retain a benefits attorney to assist in the appeals and considerations – this will also increase your chances of being accepted and acquiring benefits.

People are often unaware of the amount of time it takes to be approved for benefits, and the time it takes from approval to receiving benefits. It can take anywhere from a few months to more than a year to be approved for benefits, and SSDI applications generally require a five-month waiting period from the determination of disability to the awarding of benefits. People eligible for SSDI benefits are also eligible for Medicare, however there is a 24-month qualifying period for Medicare
coverage.

Applying for, being awarded, and receiving disability benefits is a lengthy and involved process. It is important to be prepared for this process, and to discuss this process beforehand with (1) medical providers, to ensure that the necessary tests and information are available; (2) employers, about post-employment insurance options, and (3) advocates or attorneys who may be able to assist in the process.

Conclusion

With advancements in assistive technology, MS treatments, and civil rights and employment legislation, people with MS are able to maintain employment longer than ever before. However, there may come a time when leaving employment and applying for disability benefits is the best choice for you. This decision should be made after you have explored all employment options and protections, consulted health and rehabilitation professionals, outlined a solid financial plan, familiarized yourself with the SSA application process, and made a fully-informed decision.