Multiple Sclerosis: The Invisible Disease

Accommodating pernicious illnesses like MS requires great courage from the employee and a genuine willingness to assist from the employer

Here’s something you may not know: Canada has the highest rate of multiple sclerosis (MS) in the world. The disease affects more than 100,000 patients nation-wide with a 2:1 ratio of women to men. It is often referred to as an “invisible disease” because its symptoms often go undetected and then appear suddenly without warning. Vision may be blurry one day and the next day there might be memory loss, a loss of mobility or dizziness, among other symptoms.

The course of MS is different for everyone, which makes it difficult to predict outcomes. For most people, it starts with an initial attack that is usually, but not always, followed by a full or almost-full recovery. Weeks, months, or even years may pass before another attack occurs, followed again by a period of relief from symptoms.

With the rate of the disease doubling in Canada since 2008 — this compared with a just 10% overall global increase — employers are under increasing pressure to respond to the issues posed by chronic illness. Every case is different. Many workers who suffer from a degenerative disease struggle to work at their optimal ability and then their condition may go into remission without a predictable prognosis.

Making accommodation work

For accommodation to work, it requires great courage and tact from the employee and a genuine willingness to assist from the employer. Employers want to be seen as progressive and caring — most of them know that diversity in the workplace is not only right, but makes good business sense. Most employees with MS want to be able to maintain their dignity and independence at work, as well as gain an income for themselves and their families.

Still, accommodation is a hard conversation to have and can easily go off the rails. Ideally, employees would feel comfortable discussing the situation with their employers, who would then look to help the employees as required. The sad reality is that in practice, patients often live in the hopes of their condition improving and are fearful of disclosing their MS. They often believe they are at risk of dismissal and are not aware of their rights or of their employer’s legal responsibility to accommodate them.

In some cases an employee may even have a boss who cannot maintain confidences or else has seen his or her coworkers dismissed for much less. To disclose any form of weakness can indeed put some sufferers at heightened risk of job loss.

Oddly, there is no duty to disclose one’s diagnosis when asking for accommodation, though the employer is entitled to receive a doctor’s note about the patient’s condition. This puts the employee in an awkward situation: the employer may become suspicious if he or she is reluctant to disclose. Some employers may not be convinced of the employee’s need for accommodation given the lack of visible symptoms.

In Ontario, the Ontario Human Rights Code protects disabled workers against discrimination in the workplace. Employers have a duty to accommodate workers and enable them to work to the best of their ability. However, the adherence to the Code depends on voluntary compliance by both employees and employers and there are several sticky issues that can undermine even the most well-intentioned efforts. Generally, employers can alter work schedules, tasks, location, or job transfers so long as this does not cause “undue hardship” to the employee. The employer has the right to refuse accommodation if the employee is deemed to be a health or safety risk to others or is unable to produce work that meets standards for the business to survive.

Current workplace health policies and practices generally aim for the return of injured or ill workers who are off the job; otherwise they may encompass wellness programs as a way of reducing employee absence by keeping staff healthy.

Steps to move forward smoothly

1. PLAN FOR THE LONG-TERM
   Unlike acute conditions with fairly predictable outcomes, people with chronic degenerative conditions live in the unknown. The employee is already terrified of the future and the employer needs to reassure the employee that he or she will be accommodated for as long as possible.
2. BE REALISTIC
   Both parties need to work together to accurately assess the employee’s ability to do his or her job. Employees typically overestimate their abilities and employers may be too quick to judge performance. Create an objective performance chart that lists specific duties, how they are to be performed and what the measures for outcomes are.
3. BE TRANSPARENT
   While employees do not legally have to disclose the diagnosis or treatment history of an illness, they do have an obligation to share their condition with their employer. In practice, concealing a chronic illness is very difficult and may work against the establishment of trust; honesty and discretion are often the best policy. There is nothing to be ashamed of: the employer will be motivated to reciprocate in turn, and the employee does not have to live in fear of being found out. The only caveat is that the employee must feel confident enough to trust the employer with the information.
4. INVOLVE OTHERS
   The MS Society, healthcare providers, and community advocates are all useful resources for navigating the accommodation policies of an organization. Having to deal with HR is daunting for anyone, let alone someone with an illness, or whose symptoms may impair his or her judgment or ability to process information. Having an advocate present sends the employer the message that whatever is agreed upon is subject to scrutiny and review. Advocacy is most effective when stressing cooperation.
5. ENLIST THE SUPPORT OF COWORKERS
   People are more supportive than you think. Everyone has been touched by illness either directly or indirectly and usually people are more than willing to help. It also helps to explain that the illness is not contagious and to describe symptoms that may not be readily apparent. People often feel more fearful when they are ignorant of the facts.
6. REVIEW THE PLAN PERIODICALLY
   Accommodation should be considered a living document that can be altered as one’s health condition changes over time. As so many patients have said: “Hope for the best, but prepare for the worst.”
7. GET OUTSIDE COUNSELLING
   No one knows how he or she will react to being diagnosed with a chronic illness. Everyone experiences their symptoms differently and we all have different levels of resilience, coping skills and support. Blame and shame are common feelings and it is very easy to slip into despair. Employees should establish a good working relationship with a skilled therapist during the early stages of the disease to ensure that when things get tough, the therapist is already there and knows the patient’s psychological makeup. A good therapist can make informed recommendations for the future.

Chronic illness is pernicious. It eats away at self-worth and affects spouses, children and caregivers. It offers no cure and often dashes our hopes; however we have no choice but to continue. In some cases chronic illness may defeat our bodies, but it cannot and should not defeat our souls. Our lives matter, not only to ourselves but also to our loved ones.

In the end, workplace accommodation is not just about the rights of disabled workers. It is a reflection of the society we live in and the kind of space we want to make for people who struggle with their health.