MS can cause a variety of symptoms that may affect your ability to work. These include problems with balance and coordination, speech problems, difficulty walking, vision changes, fatigue, weakness, and memory problems. MS symptoms vary a great deal between people, and even at different times in the same person. As a result, it is hard to say how MS will affect your ability to work. Some people with MS are able to continue working with hardly any disruptions; others have to adjust their work arrangements due to their symptoms; and a few find they are unable to work.
Figuring out whether to stay at your job is a personal decision. There are many factors to consider, including:
- The nature of your condition: If you have a relapsing form of MS, it's important to take into account the fact that symptoms wax and wane. Some people decide to leave their jobs when they are going through an exacerbation, only to find that once they are in remission, they are able to return to work. If you think you might like to come back to work, consider applying for short-term disability or a medical leave rather than leaving your job altogether.
- Options for workplace accommodations: If you are having difficulty doing your job, look for ways to modify your job responsibilities, hours, or environment. These are known as workplace accommodations. You have a legal right to reasonable accommodations. If your employer refuses your request for them, seek legal advice (for more information, see the "Working with MS" section of this health feature).
- Your health insurance benefits: When weighing the benefits and risks of leaving your job, consider your drug and disability coverage. If you quit and decide to come back to work later, you may no longer be eligible for insurance (most plans don't cover pre-existing medical conditions, including MS). However, if you go on medical leave it is likely that you will be able to keep these benefits. Check with your employer to be sure.
Many people with MS struggle with the decision of whether to disclose their condition to their employer. Each person's situation is different, and just as there are many reasons why someone with MS may want to tell their employer about their condition, there are many other reasons why they may want to keep it a secret.
You are not legally required to tell your employer you have MS. The decision of whether to tell your employer you have MS and, if so, when is up to you. Some people disclose their condition as soon as they have the diagnosis, others wait until it starts to affect their ability to do their job, and others choose not to disclose it at all.
Reasons why people disclose their condition include wanting to offer an explanation for visible symptoms, finding it stressful to keep the condition a secret, and wanting to have the support of their employers and coworkers. Reasons for not disclosing MS include concerns about discrimination from employers and coworkers, missing opportunities for promotions, or loss of job security.
You are entitled to ask for workplace accommodations in order to continue doing your job effectively (for more information, see the "Working with MS" section of this health feature). When asking for accommodations, you do not need to disclose to your employer that you have MS, only the limitations you face in carrying out the essential duties of your job. Your employer cannot ask about your diagnosis, only about your ability to carry out your job duties.
If you do decide to tell your employer you have MS, keep in mind that they may not know as much about MS as you do, and may be concerned about how the condition will affect your work. Explain how the condition may affect your ability to do your job, reassure them that you are committed to providing good value as an employee, and request any reasonable workplace accommodations that you may need in order to continue working effectively (see the "Working with MS" section of this health feature for more information). It can also be helpful to provide them with more information on MS, such as the MS Society of Canada's booklet "An employer's guide to multiple sclerosis in the workplace."
If you do decide to disclose your diagnosis of MS to your employer, your employer must keep this information confidential and respect your wishes about whether to disclose any information to your co-workers about your diagnosis.
Most people have found their employers to be quite flexible and helpful during this process. Seek legal advice if your employer threatens to terminate your employment or cut off your health benefits, or if they refuse to offer you reasonable workplace accommodations.
Human rights laws in Canada require that employers offer reasonable workplace accommodations to people with disabilities, including people with MS. A workplace accommodation is a change to an employee's working hours, role, responsibilities, or working environment that helps them continue to do their job in spite of a disability. The laws are intended to ensure equal rights in the workplace for people with disabilities.
An accommodation is said to be reasonable if it does not cause "undue hardship" to the employer. Undue hardship is measured both economically and in terms of the health and safety of the workplace. Because this depends on the unique needs of the business and the employee, it is evaluated for each individual situation.
MS symptoms vary widely from person to person, so there are a variety of accommodations that individuals with MS may find helpful in the workplace, including:
- changes to the physical environment at the workplace. This may include installing an air conditioning unit or fans in the person's work area, relocating the person's workspace closer to the washroom, offering a parking space that's close to the door, adding guard rails for safety, making the work area wheelchair-accessible, or adding an electronic door opener.
- changes to work schedule or arrangements. For some individuals with MS, reducing the number of hours per week, working regular hours instead of shift work, job sharing, flex time, scheduling rest time during the day, having an assistant, or working from home may reduce fatigue and help them work more productively.
- using assistive devices or modifying work equipment. Large-print computer displays can be helpful for those with vision problems, voice dictation software can allow people with coordination or muscle weakness problems to continue using a computer, and electronic organizers can help employees with memory problems.
- reassignment to a different position. If you are no longer able to do your current job but are qualified for another role in the same company, your employer may offer to reassign you (for example, from field work to a desk job). The pay and advancement possibilities will depend on the nature of the new role and may be different from your old role.
Although your employer is required to offer you reasonable workplace accommodations, there are limits to what they can be expected to provide. The accommodation cannot cause the employer undue hardship (as outlined above), and there are some job duties, deemed bona fide occupational requirements (BFOR), where the employer is not required to offer accommodations. BFOR are job duties that are essential to the performance of the job and cannot be modified through accommodations.
Most employers are understanding and willing to work together with their employees to find reasonable workplace solutions. If your employer has refused your request for reasonable workplace accommodations, or is planning to terminate your employment or health benefits, seek legal advice.
Some people with MS are able to continue working part- or full-time. Others, however, decide to leave their jobs for medical reasons. Learn more about what to consider before leaving work, and sources of financial support that may be open to you.
Private sources of financial support
There are two main private sources of financial support: benefit plans offered by your employer, or your own private disability insurance (a popular option with people who are self-employed). Check with your employer (and your spouse's employer if you are married) to see if you are covered. Most employers' plans require a certain minimum amount of time as an employee (often 90 days of employment with at least 20 hours per week of work), and may only provide coverage for a certain number of years or up to a certain age.
Before leaving work or reducing your hours:
- Find out more about the short- and long-term disability support programs offered by your employer, including who is eligible, what is covered, how to make a claim, and how long the coverage lasts. Many programs have a minimum amount of time on the job (in terms of total days employed or total number of hours worked) required to be eligible for these benefits. Some offer greater benefits for employees that have been with the company for a long time. If you're planning to use these benefits, be sure that you meet the requirements set by your employer.
- If you belong to a union, request a copy of the collective agreement. This agreement outlines any additional benefits you may be entitled to (including financial assistance and assistive devices).
- If you are planning to make a claim for disability or health benefits, discuss your condition with your neurologist to determine how likely your claim is to succeed (because MS varies it is not possible to predict whether a claim will be accepted).
If you are not covered by an employers' plan, check to see if you or your spouse have private disability coverage. If you do not have any private financial support, don't worry – there are also public (government) sources available.
Public sources of financial support
Financial support programs are available at both the provincial and federal levels in Canada. The following are some of the programs you may be eligible for. For more information, contact your doctor or the MS Society of Canada.
- Employment insurance (EI): This program provides up to 15 weeks of benefits for people who have had to stop work for medical reasons. Medical evidence of disability is required and there may be a waiting period before you are eligible for benefits.
- Canada Pension Plan (CPP) – Disability Benefits and Quebec Pension Plan (QPP): These programs are open to most people in Canada aged 18-65 years, including self-employed individuals, and provide a regular monthly benefit pension. This pension may be higher for people with children under 18 (or children 18-25 attending college or university). At age 65, the benefits continue in the form of a retirement pension. Medical evidence of disability is required.
- Survivor's pension: If your spouse is deceased and you are at least 35 years old (if you have a disability) or have dependent children, you may be eligible for a survivor's pension.
- Provincially-funded social assistance or welfare programs: The details of these programs vary by province, but most provide a disability pension for people who cannot work (medical evidence is required) and who do not have sufficient funds to support themselves. They may also provide support for other services such as transportation and assistive devices.
- Service clubs (such as the MS Society of Canada) may provide additional support and services to people with MS.
It's important to realize that claims to public programs may be rejected the first time around. However, some claims are later accepted during the appeal process. Be sure to have your neurologist complete the medical portion of the forms, and keep a copy of all forms for your records in case you need to make an appeal. Appeals must be made within the required timeframe or you may lose your chance for benefits.