Managing Work & MS
For many people, their jobs and careers play a large role in who they are. Work provides structure to the day, creates a place to engage in social interaction, and is a way to feel productive. Studies have shown that people who are employed are happier, healthier, and more socially active than people who are not. Managing MS at work for some people can be a challenge, however, there is support and laws available to protect you. The following resources are designed to inform you of the laws and supports that are out there to help you manage your MS and continue working.
Career Crossroads: Employment and MS
Career Crossroads: Employment and MS was designed by employment and MS experts to help individuals living with MS remain in the workforce.
Career Crossroads is offered as either an in-person or self-guided coached program. To jumpstart your learning, you can access the self-study workbook and the companion videos below, or call 1-800-344-4867 to receive the self-guided program and companion DVD in the mail.
Career Crossroads Self-Guided Program:
- Career Crossroads Participant Self-Study Workbook
- Working With MS
- The Law is on Your Side
- My Litttle Secret
- Maximize Your Potential
- You're Not Alone
- Taking Charge
The ADA and Accommodations
It is important to familiarize yourself with your rights under the Americans with Disabilities Act (ADA). Under the ADA, it is unlawful for an employer to discriminate against an employee with a disability. For more in depth information about your rights under the ADA, please click the following link. ADA Guide
A benefit of the ADA is that it allows you to request reasonable accommodations at your job (or also at a job you are applying to). Reasonable accommodations can include.
• providing or modifying equipment or devices,
• job restructuring,
• part-time or modified work schedules,
• reassignment to a vacant position,
• adjusting or modifying examinations, training materials, or policies,
• providing readers and interpreters, and
• making the workplace readily accessible to and usable by people with disabilities.
Accommodations are very important to consider if you think they are necessary so that you can better manage your MS and your work. It is important that you do your research and know what accommodations you are seeking before approaching your employer. For more information about accommodations, such as how to request an accommodation at work and different types of accommodations, visit the Job Accommodations Network (JAN) and type in multiple sclerosis. ASK JAN
FMLA as an Accommodation
If you are having a bad day due to your MS and feel you need to take time off , but are concerned about your job you do have the right to utilize the Family and Medical Leave Act. This act allows you to take days - even hours - off intermittently when you feel you need to and have job protection. FMLA time does not provide you with income however is unpaid leave. To find out more about FMLA and if you are eligible check out the following websites:
FMLA Interactive Medical Advisor
Family and Medical Leave Act
Symptoms of MS that impact work and how to deal with them
Perhaps you already have certain accommodations or have decided that you do not need any, but are still feeling like your MS is taking a toll on your work performance. Or perhaps your work performance is fine, but you end every single day at the job feeling very fatigued , feeling unsure about how much longer you can continue to juggle both MS and work. You are not alone. Many people living with MS face these problems. Below are common symptoms of MS that can affect your work.
Fatigue is the number one reason why people with MS have to leave their jobs and go on disability. If you have to expend more energy to get things done, you are going to be more tired. It is important to be evaluated for mental health problems such as depression, as fatigue is a major symptom of depression and often, if the depression is treated, the depression and accompanying fatigue can be helped.
Other factors that can impact energy levels include medications and lack of sleep and lack of exercise.
Strategies to help with fatigue at work:
• Create an activity diary to find out when exactly you are fatigued during your day. Rate your fatigue on a scale from one to 10, (10 being where you cannot stand up or raise your leg because you are so tired and one being that you are at peak energy). Keep this diary at your desk or close to you and write down your activity every half hour, what MS symptoms you’re experiencing, and your fatigue number (one to 10). If you look at your diary and see when you are becoming tired and what you did before the fatigue occurred, you can more accurately devise a plan to make changes.
• Utilize ergonomics! Ergonomics is the practice of setting up the office or workspace in the most efficient way possible to make activities less fatiguing. What is the size of the space you are working? Are you standing too much or reaching too much? Are you parked too far away from your office so that you are fatigued once you get there? What is the temperature of your work environment? Is there noise that can be causing stress and fatigue? Do you have to share a space with multiple people and their conversations are distracting? Is there a lot of clutter around your work area that makes it difficult to find things? How is the lighting – too bright or not bright enough? (Eyestrain can cause headaches and fatigue). What is the height of your work surface? Your work surface should not be too high, too far, or too low. You should keep what you use most frequently at waist-level, which will cause you to expend the least amount of energy. This information is very important and can make a big difference in how you feel. For more information about how you can set up your workspace so that you are more efficient and less fatigued. Visit Ergonomics.Org for more information.
• Once you have developed an activity diary and assessed your work environment, it is important to modify those activities that you have found to be fatiguing. Can you do a particular activity at a different time of day when you usually have more energy? Could you perform the more sedentary activities in the afternoon when you have less energy? Is there any technology available that can help you get a particular task done with less physical exertion? Are there certain activities that you are doing that you could delegate to others? If you need help figuring out how to modify your workspace and your work schedule, a Vocational Rehab Counselor can help. The Rehabilitation Service Administration is a federal agency that has programs in every state. If you would like to contact your state’s program vocational rehabilitation program, go to Listing of Vocational Rehabilitation Offices by State
• One reason that people, in general, can experience fatigue at work is because they are bored with their job. If you think this could be a cause of your fatigue, it is important to try and find ways to make it more interesting and challenging for yourself.
• Take a nap during the work-day, even if it is only for five to 10 minutes. Try bringing your lunch to work so you have more time during your lunch break to relax. Go somewhere relatively quiet, put your head down, and relax your mind. The “nap” is only restorative if your mind is completely clear and free of worry.
• Consider asking to work from home if the nature of your job allows for this. You can request it as a reasonable accommodation. Technology allows for many job tasks to be done remotely. Working from home one or two days a week can eliminate some of the stress and time spent commuting. It may also make it easier for you to take rest breaks during the day.
Cognitive Changes
In addition to fatigue, individuals living with MS say that cognitive challenges are also difficult to overcome while working with MS. The most common cognitive changes that can affect job performance are attention, concentration, and short-term memory. It is very important to consult with your doctor about any memory changes you think you may be experiencing. Your doctor can provide you with a referral for a neuro-psychological exam to see what specific cognitive problems you are experiencing, and set you up with a rehabilitation specialist who will help you work on your specific issues. It is important also to note that cognitive changes can be influenced by fatigue and depression. If you are fatigued, you are not able to take in information and hold onto it long enough to encode it into long-term memory. However, if fatigue is not a cause of your cognitive problems, here are some tips that may help you manage all of the information you are receiving throughout your workday.
• Keep a planner or notepad right next to your desk or in your bag to remind yourself of what you have to do for the day or use your phone to generate lists. Cross tasks off as you complete them.
• Have a particular place for everything and always put things back where they belong; encourage others to do that too.
• Take your time with tasks. Plan your work and do not feel rushed.
• Just as you did with your fatigue journal, keep a cognition journal. Write down particular times of the day where you have noticed you are having more cognition problems. Reorganize your activities so that you can do the more cognitively-demanding activities during a time when you are better able to focus.
• If you need accommodations, prepare a list of what you need.
• Do not take on more than you can handle. Be comfortable to say no to someone who asks you to perform a responsibility outside of your job requirements.
• Avoid multi-tasking! Focus on one job task at a time. If you are working on something and then the phone rings, let it go to voicemail.
• Assess your work environment for distractions. If there are certain distractions such as noise from other co-workers, see if you can ask your supervisor for a space that is a little more private.
• If a private space is not possible, utilize a white noise machine to reduce surrounding distractions. These can easily be found online.
• Currently, there are no FDA-approved medications that specifically address cognitive symptoms for people living with MS. However, some doctors do occasionally prescribe medication that is typically used in Alzheimer’s patients. It is important to talk to your doctor about any medications, herbs, supplements, etc., that you may be interested in using.
Wellness Tips to Manage Fatigue and Cognitive Challenges
If you are using all of the above tips at work, making sure your workplace is as “ergonomic” as possible, utilizing any necessary accommodations, keeping an activity diary, rescheduling your day so you are completing the more difficult tasks when you have more energy/focus, then consider other lifestyle changes that could perhaps help. Even if you are practicing all of these energy/cognition-saving strategies at work but are still not practicing “fatigue-fighting” strategies at home, you will still experience challenging symptoms on the job. Incorporate the following tips into your lifestyle to help improve your overall energy and cognitive levels.
• Sleep! It’s difficult to be effective at work if you do not get enough sleep. This may mean that you have to restructure how things are done at home to make sure you are in bed at a certain time.
• Exercise! Many people feel too tired to exercise so they don’t, which just makes them feel even more tired. Studies prove that exercise is a very effective way to increase energy levels. Exercise is also shown to improve cognition in people with MS. Of concern for some people living with MS is over-heating. Make sure that you drink plenty of water, avoid exercising outside in the heat, and use a cooling towel if need be. Try to engage in some amount of exercise for your ability-level every day. It is important to consult your doctor before starting any exercise program and make sure that you are taking precautions when exercising.
• Eat a healthy and balanced diet. What we eat is important for good-health and for maintaining energy levels. If you can eat nutrient-rich food and cut out those quick-energy fixes such as sugar and caffeine, you will feel better and have more energy.
Please note that there is currently no one diet recommended to treat multiple sclerosis. It is important to maintain good nutrition, but there have been no conclusive studies indicating that a particular diet can be a cure.
It is important to note that each person is different and should develop a meal plan that is right for his/her body and lifestyle. Any change in diet should be discussed with your doctor. If interested in working with a nutritionist to get a customized, energizing meal plan, visit the American Dietetic Association at Eat Right.
Related documents for additional information about fatigue and cognition
• Article - On the Job with Fatigue and Cognitive Issues (.pdf)
• Article - Tackling Fatigue (.pdf)
• Article - What We are Doing About Symptoms that Can’t be Measured Easily (.pdf)
• Brochure - Fatigue (.pdf)
• Brochure - La Fatiga (.pdf)
• Brochure - Sleep Disorders (.pdf)
• Video: Fatigue: Take Control
• Video: Getting There: Staying Mobile with MS
• You Can...Get the Sleep You Need
• You Can...Maintain Good Nutrition
• Fatigue