Who should read this booklet?

Why should you read this?

Those who live with Multiple Sclerosis (MS) face the same challenges that healthy people face in the workplace, but having MS may create some additional problems for you. It may also develop your ability to approach tasks in original and interesting ways, making you a uniquely valuable employee. Living with MS often creates a shift in your priorities and your behavior, and it’s critical to understand how this affects what you do and your decision-making process. Living with MS is enough of a challenge – you don’t have to figure this out on your own. Learn from the success (and failure) of others.

Who we are:

The Accelerated Cure Project for Multiple Sclerosis is a national nonprofit dedicated to curing MS by determining its causes. We believe the fastest route to a cure will come from knowing what causes MS. We have created a number of documents both to educate people about MS and to educate those who live with MS. For more information visit www.acceleratedcure.org, email info-wwms@acceleratedcure.org, or call 781-487-0008.

Rosalind Joffe is founder and principal of CIcoach.com, a company devoted to giving people living with chronic illness the services, products, and resources they need to be successful in the workplace. Rosalind has lived and worked with Multiple Sclerosis and other autoimmune diseases for almost 30 years. For more information visit www.cicoach.com

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“I want to be known as Sarah, not Sarah with Multiple Sclerosis. If I tell people about this disease, that’s how they’ll think of me, and I can’t bear that. On the other hand, if I don’t tell them, they’re not going to understand why I’m walking slowly with a limp or have to work from home for days at a time when I’m too tired to drive to work.” – Sarah, 27

Your ability to live and work successfully with Multiple Sclerosis (MS) depends on whether you can minimize your limitations and maximize your strengths. You face the fact that your life is different from what you prepared for or could have expected. This booklet is intended to challenge your thinking and to give you the information, resources, and tools you need to meet this challenge. But it doesn’t supply answers. That’s your job. Today is the moment to take charge of this life.

Invisible Symptoms

MS symptoms are often not visible. This can mean that you look healthy, regardless of how you feel. You might think a limp or uneven gait is obvious, but the truth is, many people won’t notice it. This can work in your favor when there’s no need for others to know. But it can also make it more difficult for others to recognize what you’re going through.

Just because you might have told people about the disease, doesn’t mean they will necessarily remember. It’s easy for others to forget what they don’t see.

Here are some tips to get the support you need from others:

• Keep any discussion about your health matter-offact. This is not the time to share your own feelings about having MS. Instead, focus the conversation on how the symptoms affect your work.
• Let others know you’re doing the best you can not to be a burden. When you can’t do something, be prepared with alternatives rather than expecting others to solve the problem.
• You can help others understand the variability of your symptoms by explaining that there will be times when you can’t do something today that you could do yesterday, even though you look the same.

“Every so often, someone on my team makes a negative crack that I didn’t go to a meeting at Building P. More than a year ago, I explained that on hot days, I can’t do the quarter mile walk and sit in a hot auditorium. I get so angry when I have to explain again that it’s not because I don’t want to join them. I don’t go because it could make me feel so badly that I’d have to leave work for the rest of the day. I can’t take that chance.” – Dave, 28

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• Try to keep your expectations low regarding the emotional support you get from others, particularly if your situation makes their work harder. If everyone shares the same goals for the organization and you’ve demonstrated your willingness to do your part, you’re more likely to get what you need to do your job, which is most important.
• Many people know someone with MS and this often shapes their ideas about what you can and cannot do. When you hear a comment that you find offensive, you have two choices: you can ignore it and go about your business. Or you can take the opportunity to educate others about this illness. Either way, when someone notices that you’ve developed some good tactics to manage your health, make sure you pat yourself on the back for the good work.

FAILING TO MEET EXPECTATIONS, YOUR OWN AND THOSE OF OTHERS, IS SOMETHING THAT NO ONE CAN COMPLETELY AVOID

Unpredictable health makes this more likely, but there are things you can do to keep it to a minimum.

Look at deadlines as something you can control, no matter how much others pressure you

Be rigorous in creating reasonable deadlines that you can meet, because you know the unexpected can and does happen.

Avoid the trap of thinking you’re able to push yourself the way you used to

If you work in a highly pressured environment where everyone lives with high-performance expectations, you have to be very careful to know your limits. This is especially difficult because your health limits can be a moving target. But remember: just because others can afford to push themselves to meet tight deadlines on too little sleep, that doesn’t mean you can. It can be tough to accept this idea of yourself, but it’s a small price to pay to stay well and in the workforce.

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Steps you can take to prepare your team in the event that your health becomes a problem:

• Be realistic about deadlines and try to build in a “fudge” factor to allow for the unexpected.
• Encourage cross-training on your team wherever possible.
• Develop an ally who is willing to help when you need it, with the understanding that you will do the same for them.

Many people who live with MS, or any chronic illness, dream of self-employment

Self-employment means working solo. It can sound like the answer to your dreams, because it eliminates having to answer to a boss who doesn’t understand your physical challenges, and offers the possibility of flexible scheduling. Self-employment allows you to follow your dreams, with no one there to argue with your ideas.

But self-employment also has some demanding requirements. You need financial backing while you’re building a business, particularly to pay for health benefits. You need the discipline to stick to a schedule when you aren’t accountable to anyone but yourself. You have to allow for the times that you aren’t well, which might mean hiring a layer of support or creating a job that allows you to intermittently slow down or stop. You must consider a short-term (and maybe long-term) decrease in salary. And you most likely will pay for benefits out of your own salary.

If you can manage all of the above and have a solid business idea, self-employment offers a strong opportunity for success

• You can create your own schedule (if you allow yourself, that is, and don’t give in to other people’s demands).
• You can ramp up or pull back when you need to, as health or other needs require.
• You have the opportunity to do only what you can do (with your health in mind) without being forced to participate in activities that are draining.

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“I just got a job offer that I’ve wanted for three years. It’s a great next step in my career and, with kids in college, I need the increase in income. But recently my MS has been worse. Will the extra pressure make me sicker?” – Susan, 46

People in our community who don’t have Multiple Sclerosis (MS) face a set of challenges in shaping their career. The choices they make in choosing a job or building a career are strongly influenced by events and choices in their personal life, and vice versa. Those who live with MS have a third influence on their choices because a chronic illness inevitably plays a strong role in both personal and career choices.

It’s important to understand that no matter what stage of life you’re in when you receive your diagnosis, you have choices about how MS impacts your career and personal directions. Throughout your life, these three factors (health, career and personal) continuously intersect as they shift in their level of priority.

It’s easy to see that where you are in your career and life influences the decisions you make. It’s not as obvious but just as important to understand that there are also stages that people experience when they live with MS, from diagnosis to learning to live with the disease to real acceptance. While you don’t have complete control of your health, you do have control over how you let it influence your decision-making process. It’s up to you to decide how you will let an MS diagnosis impact your life

For example, imagine a young woman, Sandy, in her early 20s, just out of college and starting her career. She has a bad flare (optic neuritis and numbness) from which she completely recovers and receives the diagnosis of MS. In one scenario, Sandy, emotionally devastated and very frightened, focuses on the worst possible outcomes. She chooses not to attempt challenging career moves, thus limiting her career satisfaction and earning power. She also has trouble dating because she worries that no one would want to marry someone with her problems.

Managing The Unpredictable

Living with Multiple Sclerosis (MS), or any disabling condition, doesn’t preclude the ability to work. Like any person with good health or not, you can face and overcome obstacles by reorganizing your approach, creating realistic expectations, and finding other options. This takes discipline and self-control.

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“I know that my performance is slipping, but I can’t decide whether to tell my boss about the MS. I’m afraid he’ll think I should leave my job.” — John, 29

For many working people with Multiple Sclerosis (MS), one of the most provocative issues is the decision to talk about the disease with co-workers or supervisors for the first time.

Conventional wisdom holds that you should disclose your illness at work only if you absolutely have to. The thinking here is that disclosure will most likely hurt you, and there is certainly some truth to that. But there is hardly a “one size fits all” solution and it’s best to look at the issue of disclosure from several points of view.

ing depressed or isolated, discussing your situation can help you connect to others and do better. MS is a significant part of your experience and hiding it makes it much more difficult to stay fully integrated in the world.

WHAT ARE SOME REASONS NOT TO DISCLOSE?

Many people find that when others know about their MS, it changes how they are perceived, regardless of whether it’s warranted or not.

People might make incorrect assumptions about you:

• The illness has decreased your commitment to the job.
• You can’t handle as much as before. (The result: you’re gently — or not — pushed aside or marginalized.)

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IF YOU CHOOSE TO DISCLOSE, CONTROL AND CRAFT YOUR MESSAGE

Who should know this?

• Is this information meant for everyone? Make it clear.
• If you want to control who knows you have MS, let it be known that it’s on a “need to know basis” and you’ll tell those you want to know.

What should they know?

• Some people don’t name the disease because there are misconceptions about MS. They describe it as a chronic condition (or disease), or an autoimmune disorder.
• On the other hand, MS is a familiar and well-recognized disease and identifying it as such can reduce the likelihood that others will think it’s “in your head.”
• KISS (Keep It Short and Simple) is a good motto to remember. Keep the message clear, know your facts, and deliver your explanation calmly to minimize confusion and maximize everyone’s comfort. Don’t confuse co-workers with too much jargon, but don’t let them rely on misconceptions.
• Focus on your talents and strengths, not on what you can’t do.
• Provide some examples of how MS affects you: increased doctor’s appointments, trouble using your hands, reduced ability to walk, etc.
• Reassure those who might worry by telling them you’re prepared to take care of your health, so it will not burden others.
• Explain what has changed and why you are disclosing the MS now. Some might wonder if it’s been a problem for a long time, so you may want to reassure them that only now is it a problem. You’re talking about it for one of these reasons:
• You need some accommodation that requires a financial investment or systems reorganization
• You want to do something differently so the symptoms don’t get in your way
• You’re not asking for an accommodation but things have changed for you (for example, you’re not as quick as you were, or you’ll be taking some time off)

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• If you’re an administrative or front line worker:

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You are more vulnerable to being pushed aside or targeted negatively for an illness if it affects your performance.

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You have to be vigilant in making sure you can do your job, and where you can’t, you must get the help you need.

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You have to demonstrate your commitment to getting the job done even when you can’t do it on time or on your own.

A final comment about disclosure:

People usually need time to digest the news that you have MS. It can be an uncomfortable topic and most people don’t know what to say in response to the news. You might suggest that you’re available to discuss their questions at a later time.

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If you don’t need accommodations and your performance is unaffected, then the timing for disclosure is your choice.

You might choose to do it immediately or to wait until the symptoms become a problem. You should ask yourself:

• Am I ready to talk about this with other people? If you’re feeling scared, overwhelmed, or angry about this issue, you might want to become more accustomed to the idea before discussing it with others.
• Have I had sufficient time to live with the disease to learn how it will affect my body?
• Am I being realistic about what I hope to get from others?
• Do I know enough to talk about this disease competently?

EVALUATING WHETHER TO DISCLOSE YOUR ILLNESS AFTER LIVING WITH MS FOR A PERIOD OF TIME

Sophisticated tests make it possible to know you have MS when you barely feel any symptoms. Or maybe your diagnosis came after one brief episode but you were fine for a long time afterwards. Either way, maybe you felt there was no reason to talk about the illness because it wasn’t a factor in your life. But now things have changed and your increasing symptoms are affecting your work. What do you do now?

Consider the following:

• If you need to ask for help and/or accommodations that will allow you to continue to be successful, you have to disclose the MS.
• If your performance is suffering, disclosure will prevent others from making incorrect and potentially damaging assumptions about why your performance has changed.
• Disclosure allows you to be more open with others when you have to and will help you feel less isolated.

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When you first get a diagnosis of Multiple Sclerosis (MS) it’s easy to imagine yourself in a wheelchair someday, because that’s a picture many of us associate with the disease. In fact, only 25% of those who live with MS ever need to use a wheelchair, and with improvements in treatment, that number is decreasing.

That doesn’t mean you will never have debilitating

(that which impairs your physical or intellectual strength) or disabling (that which deprives you of strength) symptoms. The fact is, at some point, you could experience MS symptoms that interfere with performing tasks that are necessary for your job.

• If your work has been sliding recently and you’ve received a warning or negative feedback, it could be more difficult to get the support you need.
• If the environment has always been a difficult one for you to succeed within, ask yourself: Do I want this job enough to make a request? Do I believe it’s worth it to negotiate or even face conflict to get what I need to stay?
• If you get these accommodations, will you be able to be successful here? If you can say yes, you’ll know it’s worth the effort.

There may come a time when you employ option #3 because you know it’s the best choice you’ve got. It’s rarely easy to quit a job (especially if you don’t have another one lined up). But when you just can’t get the accommodations you need to be effective in your job, it’s time to move on. Similarly, it’s just as important to recognize job situations that don’t offer the flexibility or environment that you need to thrive in before you take or start the job.

INCREASE YOUR CHANCES OF GETTING THE ACCOMMODATIONS YOU NEED

Do your research and be prepared. Here are some steps to take:

1.Do a functional analysis of your job.

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Make a list of job responsibilities.

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Break each responsibility down into tasks.

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List what is functionally required to do each task.

2.List activities that you can’t do because of disabling symptoms.

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Include all tasks or activities that you can’t do, regardless of your job. This will be helpful if your supervisor wants to place you in a different position.

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Get any documentation from a specialist that will support your claim of disabling symptoms.

3.Determine what you need to continue to be effective in your current job. Some examples:

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You need more time for tasks.

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You need a workstation that fits your ergonomic requirements.

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You need a half-time person to fill in when there is additional work.

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Gather annual reviews and other documentation supporting your positive work history (this is not mandatory, but it is helpful).

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Determine if there are other jobs in your workgroup (or elsewhere) that you could try, ones that would eliminate the need for an accommodation that could create “undue hardship” according to the Americans with Disabilities Act (ADA). Doing this demonstrates your willingness to be flexible. (For more, see the ADA online: www.usdoj.gov/crt/ada/adahom1.htm)

6.Meet with your boss (or other decision-maker) to discuss the situation.

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Identify the problem and present your ideas for a solution. Have as much information as possible regarding costs and who the changes could affect.

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Frame your case to demonstrate how the positive outcomes outweigh the negative logistics and costs.

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Stick to the facts and don’t let the discussion become personal or emotional. It’s not about you. It’s about the job you do.

It is usually easier to get “reasonable accommodations” from your current employer than to find a new job that offers the accommodations you need. Option #3 should only be exercised when you have fully explored options #1 and #2.

SOME THOUGHTS ABOUT CLAIMING AN ACCOMMODATION AS YOUR “RIGHT” UNDER THE ADA

There are numerous resources available that explain the ADA and its obligations and benefits. In particular, the handbook “Know Your Rights: A Handbook for Patients with Chronic Illness” (see Resources, back cover), offers excellent guidance. It offers comprehensive information on such topics as health and disability insurance, types of discrimination, and equity issues, to name a few. One piece of good news about the ADA is that in addition to protecting the rights of the disabled, the Act has raised corporate awareness about disabilities.

On the other hand, most people don’t think of chronic illness as a disability, especially one that falls under ADA guidelines. (In fact, such cases have not always been successful in litigation.) If you believe your rights are being violated, it’s important to check with a lawyer. In the long run, if you can get the accommodations you need to perform your job without turning the process into a legal dispute, it will be less expensive, less adversarial, and less unpleasant for you.

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“I need a different job. This job is making me sicker. But I can’t think about looking for another job because I can barely manage this one. I should quit so I have the time to look for a job. But what if I can’t find anything? I can’t afford to lose my insurance.” – Gary, 37

Struggling in a job when you have debilitating symptoms can feel like a lose-lose situation. Are you pushing yourself to keep going, but delivering substandard performance? Do you think you would feel better if you could find a different job, or stop working altogether? There’s no single answer to these questions—each of us has to figure out what’s best for us based on the situation. Here are some criteria to assess your situation; they can help you make the best possible decision:

pros and cons of keeping your job while looking for a job elsewhere.

Evaluate the pros and cons of leaving the work force.

Q:

Do you believe you are too sick to do your current job or something similar?

Q:

Would you use the time off from work to accomplish things you can’t do while you’re still working?

Q:

Do you qualify for a private disability policy or public disability insurance (more at www.ssa.gov/applyfordisability), or can you afford to be unemployed without an income?

Q:

Do you believe you could get better by not working for a while and having the time to rest?

Q:

Do you think that not working would be beneficial or harmful to your mental health?

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Today, employees lose and leave jobs at a much higher rate than in past decades.

25% report they expect to lose their job at some point (Manchester Partners International Outplacement)

27% say they would leave if they weren’t happy (Sirota Consulting Co.)

These statistics are important because they are true for healthy people, as well as those with Multiple Sclerosis (MS). In fact, this supports the idea that living successfully with MS requires finding a job that truly fits your health and personal needs, as well as your career interests. Let’s look at what you can do to achieve this.

SOME ISSUES TO CONSIDER BEFORE YOU START WHERE DO YOU START?

Always start a job search by asking yourself: What do I want to do?

Don’t just respond based on your last job and what you think you can get. Take a moment to think about job-hunting from a different perspective. Work is more challenging for you when you experience MS symptoms; that’s why looking for a new job offers the opportunity to create the best possible fit within the parameters of your current state of health, your financial needs, and your personal desires. Use the information in the tool, “What do you need from a new job?” to help determine your job needs.

LOOKING AND INTERVIEWING FOR A JOB

Victim Mentality

Do you think of yourself as a victim of MS? This negative thinking will hurt your ability to get the best possible job. One way to combat victimized thinking is to list what you can still do, to remind yourself that MS doesn’t prevent you from being a capable worker. If you’re stuck, ask a friend or family member. Sometimes you just need a reminder of your skills and positive qualities.

Under-employment

Are you looking for a job in which you’ll be “underemployed,” meaning that you’re not working to your full potential? If so, be clear about why you’re choosing to do this. Under-employment makes sense if you need a job that doesn’t tax you mentally or physically. For some, this is a temporary solution; for others, it’s the only way to stay in the workforce. Use the “Must Have/Want” list (see sidebar) to prioritize what’s most important about your next job.

Resume

A resume can be your badge of honor. It can also reflect issues you don’t want to highlight, such as periods of unemployment or under-employment. You should be truthful, while presenting such occurrences in the best possible light. If you’ve been unemployed (due to MS), list any other activities you did during that time, such as self-employment, volunteering or study. If you did nothing but take care of yourself, then don’t include that time period. If you were under-employed, list details only if you want to discuss why you made that particular decision. Be prepared to discuss blanks or discrepancies.

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Examples of MS disclosure before and after hire

Before hire:

Peter, a retail store manager who has had MS for eight years, has trouble standing for long periods of time and walks with a limp. Occasionally he needs a brace, but its not obvious. He disclosed his MS when he was applying for a job because he values candid behavior during interviews. He had worked in a company where issues like his were not a problem and he wanted to be in that kind of environment again; he knew honesty would increase his chances for success. Peter was the companys second choice, but when the first candidate didnt take the job, Peter got it. Hell never know if MS is why he wasnt offered the job in the first place, but hes glad hes there and its a great fit for him.

After hire:

Susan, a graphic designer, has trouble moving a mouse and using a keyboard because of difficulty with her hands. She has become very adept at using voice recognition software and can work almost as efficiently as she could with her hands. Susan chose not to disclose her MS until she started the job, although she made sure that the office equipment was compatible with the software. The first day, she brought her software with her and got to work. One year later, when her boss was interviewed about his reaction to learning that she worked this way, he said that he might not have hired Susan had he known about the issues with her hands. However, within a few days of Susans arrival on the job, she became an integral part of the team and no one had second thoughts about her hire.

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Reasons not to disclose that you have MS during the interview phase:

• If the symptoms aren’t visible and don’t affect how you do the job, disclosing the MS could unnecessarily jeopardize your prospects.
• Disclosure can bias people against you before you’ve had the opportunity to prove your worth to the organization.

Prepare what you will say

• The first time you talk about having MS, it may be easier not to name the disease, to avoid playing into other people’s misconceptions (for example, “My Aunt Molly has MS and is in a wheelchair,” or “My friend, Bud, has MS and hasn’t missed a day of work.”). Focus on your symptoms and how they affect your performance.
• Make it clear your MS won’t be anyone else’s problem. Explain that you’ve experienced living with it, and you can absolutely get the job done.
• If you need an accommodation, what is it: voice recognition software or an ergonomic workstation? Will the accommodations cost the organization money, and how much? Is the accommodation something that the organization already has in place (like flex time for doctor’s appointments)? Consider these questions before discussing it with others.

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Questioning the Cause: Is It MS?

“I was fired and I think it’s because I have MS. People were always upset with me about the time off from work. What should I do?” – Thomas, 47

Unfortunately, however, there are many instances in which MS plays a role in a person’s job dismissal. If you believe you were fired because you have MS, ask yourself:

• Are you able to perform the essential functions of the job, with or without accommodations?
• Do you believe the MS symptoms or the demands of your illness became a “hardship” or inconvenience for others at work?
• Do you suspect others thought you weren’t capable of doing the work because of MS or your disabilities?
• Do you want this job back?
• Were you happy at this job, or were you hoping to be fired?
• Did you allow your performance to suffer so badly that they wanted to let you go before you sought help or asked for accommodations?
• Would you go back if you could? What would make this different?

Use your answers to help guide your actions.

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Sometimes, just a letter or call from an attorney will be enough to get an employer to review the situation again and make a different decision. If you intend to fight the job refusal, you should prepare your information before you speak with a lawyer. Here are some items to get started:

• Gather dates of interviews, names of those with whom you spoke, and a summary of what happened. Note anything that was said or seemed to be implied about your health or disabilities.
• Ask your doctor for a letter describing your current health (and recent health history) and how it impacts your functional abilities to work.
• Get a letter from your most recent employer regarding your work.

Decisions you make regarding your health and work should be based on what you believe is best for you. Do your best to make choices that enhance your well being, rather than sap your reduced energy and resources.

Good Luck and Good Health.

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www.doua.org Disabled Online Users Association

DOUA’s sole purpose is to bring the online world of business to the disabled.

www.nosscr.org National Organization of Social Security Claimants’ Representatives

NOSSCR is committed to providing the highest quality representation and advocacy on behalf of persons seeking Social Security and Supplemental Security Income.

www.bu.edu/stayemployed The Staying Employed Program

Offers a free job counseling service to employed persons with chronic illnesses in Massachusetts.

OTHER ONLINE RESOURCES

www.chronicbabe.com ChronicBabe.com

This online community is for young women with chronic illness who want to live their best lives. Check out all the fun resources that “Editrix” Jenni Prokopy finds for you.

www.CIcoach.com CIcoach.com

Provides coaching, resources, and materials to people who live with MS (and other chronic illnesses) to stay successfully employed.

www.healthtalk.com/multiplesclerosis HealthTalk

Helps people with chronic illness improve their quality of life, stay informed, and live with hope via webcasts that feature leading medical experts and patients.

www.kpmsfoundation.com The Kelly Packowski MS Foundation

Provides financial assistance to families and individuals in New England struggling with MS. By changing one life at a time, the foundation strives to improve the quality of life of those battling the disease.

www.disabilitysecrets.com Social Security Disability Secrets

The purpose of this web site is to provide information about Social Security Disability benefits that might otherwise be difficult to obtain.

BOOKS

I’d Rather Be Working, A Step-by-Step Guide to Financial Self-Support for People with Chronic Illness, by Gayle Backstrom. Published by Amacom, 2002. A practical, hands-on guide to finding and keeping work while living with chronic illness.

The Chronic Illness Workbook, Strategies and Solutions for Taking Back Your Life, by Patricia A. Fennell, MSW. Published by New Harbinger Publications, Inc., 2001. Offers a long-term coping model to navigate the physical, psychological, and social aspects of living with chronic illness based on the author’s own experience with her patients and research.

Know Your Rights: A Handbook for Patients with Chronic Illness, By Jennifer C. Jaff, Esq., 2005. A thorough explanation of what people with chronic illness need to know when navigating the legal system.

Multiple Sclerosis, Your Legal Rights, by Lanny and Sara Perkins. Published by Demos Medical Publishing, 1999. An extensive source of basic information about the legal problems that often affect people with MS and the possible solutions to those problems.

YOU CAN ACCELERATE THE CURE FOR MS

Detailed information on giving is available at

ABOUT THE AUTHOR

THE KELLY PACKOWSKI MS FOUNDATION