Can I keep working?
Multiple sclerosis (MS) is a disease of uncertainty. Will I have an attack? How will it change my life? What does the future hold? And one particularly vulnerable area is working life. Work takes up a third of our lives, provides financial security, enables our independence, structures our time and gives us a plan for the future. It often defines who we are – if I’m not a (job title), who am I?
All of these come under attack when we become ill. MS awakens fears and concerns that are often lying dormant. We are forced to ask ourselves: Will I be able to provide for myself and my family? Can I stay independent or will I have to rely on others? You may be left with the feeling that you have lost control over your destiny.
What is needed are some means to re-assert some measure of control and take back your life. This requires having the information at hand to make informed decisions, a bit of self-knowledge, and a plan for the future.
It’s difficult to know in advance what information you’ll need. MS is a very personal illness so your circumstances will be unique to you. If you look at the statistics, a majority of people with MS are still able to work five years after their diagnosis. Most are doing some kind of paid work 10 years later but may have switched jobs or started a new career. Fifteen or 20 years down the road the outlook is less certain.
The greatest area of uncertainty is whether or not you will have a disability. While the spectre of a wheelchair may be uppermost in your mind, disability can assume many forms. One of the more important MS symptom affecting your work life will be fatigue. Will you be too tired to commute? Can you keep working a full eight hours a day? Is your work physically or mentally demanding and making your fatigue worse?
It is usually helpful to talk to your doctor and MS clinic staff about your condition. While they can’t predict what lies ahead, they are in a good position to offer advice and give you information on the resources available in your community.
The type of work and the type of employer you have also need to be considered. Are you eligible for any employee benefits, such as time off work, lieu days, or sick days? How well are you protected? Depending on your employer you may need to tread carefully. You are under no legal obligation to inform your employer about your condition, so you may want to keep your diagnosis to yourself until you have a better sense of how your employer may react.
You’ll also need to take stock of where you stand financially. This means income and assets, credit card debts, student loans, mortgage and car payments, and so on. How much money can you earn, and what are your monthly costs? The government, major banks and insurance companies can provide you with free financial planning advice, as well as online tools (e.g. mortgage calculator) to help you.
Earnings may not be simply your salary – also investigate if you are eligible for any government funding. In Canada, Human Resources and Skills Development Canada provides information on employment, education and re-training, as well as financial supports for people and families living with disabilities, such as disability benefits through the Canada Pension Plan. Finding out about these resources doesn’t mean that you will develop a disability – it’s just gathering information about some of your options in case you ever need them.
Your MS Society also has resources available to you. In Canada, the MS Society has a number of publications, including A Guide to Employment and Income Support; Insuring Your Future: Your Guide to Life Insurance and Multiple Sclerosis; and Adapting: Financial Planning for a Life with Multiple Sclerosis.
Gathering the information you may need is an important part of the process. But even more important is to know who you are and what you’re about. MS may knock you off-kilter, but it doesn’t have to take you off course. On the day after your diagnosis you’re the same person you were the week before. So the key questions – what did you want before and how can you work to achieve it – are still important. The path you choose today will have a greater effect than MS on where you end up in the future.
It may help to keep it in mind that the future is uncertain for everyone – not just people with MS – and everyone has to make adjustments along the way. An Olympic athlete may have to retire at age 30. Is their life over? Or do they have to think about their skills and training, interests and experience, and figure out what they are going to do with the rest of their lives? After a diagnosis, you are the same person with your same interests. So continue to pursue those interests that will make you happy.
Give yourself some time to get over the initial shock of an MS diagnosis and to sort through your options. Ask yourself what you would like to be doing in five years from now, and take the steps that are required. Consider your wants, needs and goals, and talk over the issues with your family and close friends. In five years from now, see where you’re at and what you want, and develop a new schedule for the next five years.
Plan and persist. And pursue all that you hope to achieve.
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