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Work and employment

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In your prime of life

Multiple Sclerosis (MS) is diagnosed most frequently when people are between the ages of 20 and 50 - this is the time "that many people regard as the prime of life" [Rumrill, p.19]. People in this age group may be completing tertiary education, choosing a career, starting to work in paid employment, raising a family. They are beginning to make a mark in their chosen field and settling into the rhythm of their lives. The diagnosis of a progressive disease could not come at a worse moment.

What happens now?

The diagnosis of MS is, without doubt, a watershed event and the unpredictability of the disease's course is its worst feature. The message of this Information Sheet is threefold:

  1. WORK WITH YOUR MS: Do not abandon your job or your studies or whatever you are doing as an immediate reaction to your MS diagnosis.
  2. CONSIDER: Do take time to think about how MS is affecting your life including, of course, your working life. Make use of the available advice - from professional staff at the MS Society, from health care and other appropriate professionals.
  3. MAKE INFORMED DECISIONS: On your employment situation, as on any other situation in your life. Remember, you are an individual: MS is affecting you in an individual way and your decision-making process is an individual one. What is right for someone else is not necessarily right for you. Do not be pressured; do not let anyone rush you into a decision to make major changes in your life immediately your MS is confirmed by the neurologist.

All in a day's work

In Australia, as in many industrialised countries, we identify ourselves closely with our work lives. What we do for a living - our work, our career, our profession - is often one of the first things we tell people about ourselves. Our adolescent children are educated to consider seriously what occupation they will pursue after leaving school. The Australian Government makes it a priority always to help the citizen find appropriate employment and provides assistance in many ways to enable the unemployed to get paid work. It is expected by society that everyone will work in order to contribute to the advancement of the Nation and in order to support themselves financially. Work frequently gives more than an income; it gives purpose, social contact and a forum where skills and expertise can be demonstrated.

MS and the world of work

It can be helpful to consider the effects of MS on employment in five phases:

Phase 1: Education and training for work

Young adults who are diagnosed with MS while they are still at secondary school or tertiary institutions can experience serious disruption to their lives. Fatigue, visual disturbances, memory problems and problems with walking can make the student's life extremely difficult. If the student with MS cannot complete his/her course of study, then getting a job may be considerably more of a problem than it is for the person with accredited skills. But help and assistance is available from professional people at the MS Society and from other appropriate agencies.

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Phase 2: Joining the workforce

If you have MS and are trying for your first job, you too are faced with some difficult issues:

Shall I tell my prospective employer that I have MS?

You are under no legal obligation to disclose your diagnosis to your prospective employer. Perhaps your MS symptoms are invisible and your work performance would not suffer. But perhaps, to do your job, you may want or need to disclose your diagnosis so that you can ask your prospective employer for adjustments to your work area and so on. There is no easy solution here.

Telling your prospective employer in the interview that you have MS ought not, by law, make any difference to your chances of getting the job. But in reality, such disclosure probably does, particularly if the employer has only a vague idea of the nature of MS. Should you decide to tell your prospective employer of your MS, it is a good strategy to emphasise in the interview your skills and ability, rather than your disability. Remember that you are at the job interview to determine whether or not you are the most suitable person for the job and "you should discuss your MS only in relation to the work you will be doing. Demonstrating your openness, knowledge and ability to manage symptoms carefully and responsibly will reassure and impress a prospective employer" [Hodgkinson, pages 5-6]. Offering your prospective employer information about MS will often dispel misconceptions. Contact the MS Society for all your information needs.

Should you decide not to tell your prospective employer at the job interview, or at the interview at which you accept the offered position, you should be realistic and clear in your own mind that having MS will not, at least in the short term, impair your capacity to fulfil the position.

If I do not tell my prospective employer about my MS diagnosis, will I be able to conceal my condition at work?

People with MS who have concealed their condition from work colleagues say that their actions have often been misinterpreted as (for instance) distancing and isolating themselves from colleagues for no apparent reason and that all this concealment multiplied the stress and strain on themselves personally. Disclosure is an individual decision and not an easy one. Advice from MS Society professionals and from other people who have MS is most helpful in reaching your own decision.

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Phase 3: Time in the workforce

The majority of people who have MS are diagnosed in this phase of their working lives (when they actually have a paid job) and the diagnosis throws up a raft of difficult questions, of which these are typical:

There is no straightforward answer to any of these questions. Every person's situation is individual. Employers, like everyone else, react to situations in a variety of ways. Some will genuinely support the employee with a chronic health condition and work together with the employee to improve or change the situation at work in order to retain the employee. Unfortunately, some employers, on the other hand, will use the disclosure of the employee's MS as a lever to remove the employee by various subtle means.

You need to be prepared, at the time of informing your employer (whenever that may be) for your employer to be disappointed that you did not disclose your MS at the time you accepted the position. The professional staff at the MS Society are very happy to discuss these issues with you.

As the employee and a person with MS, you need to know all your conditions of employment - job specification, actual demands of the job, wages, sick leave entitlements, your union representative, your superannuation policy and entitlements. Keep all documents in a safe place and ensure that every decision is documented in writing and follows the correct industrial procedures.

Down come the barriers

Research [Rumrill p.33] supports the commonsense opinion that if employers place importance on removing the barriers the person with MS finds at the particular work situation, the employees can remain working happily and productively despite the fact of having MS. The ultimate aim and best outcome for the person with MS is to continue working for an employer who makes it a priority to accommodate the special demands MS places on the work situation. It can be of positive value if, directly upon the employee telling the employer about the MS diagnosis, the best rehabilitation services are started and any adjustments to the employee's work are made immediately.

However, we also recognise that the employed person with MS may not wish to raise this topic with the employer because of uncertainty about how the employer will react. The moment of disclosure of your MS condition is your own decision; the professional staff of the MS Society are always happy to assist your decision-making process. It is important to note that at whatever time your MS is an issue at work, these rehabilitation services can be implemented.

Where the employer has the resources and an appropriate workplace to do so, the employee may reasonably expect the following adjustments to be made:

Winning ways

When work enhances a person's quality of life and self-esteem and the person with MS is able to continue in a happy employment situation, making appropriate use of acceptable and comfortable levels of assistance at work and contributing value as a worker, then everyone is a winner.

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Phase 4: Leaving the workforce

It may be that, for a variety of reasons, the working person who has MS does decide to leave the workforce.

MS Reasons

Mobility problems and fatigue associated with MS, visual impairment, loss of co-ordination, continence problems, memory problems and emotional liability could each play a part in worsening the effects of MS. The unpredictability of exacerbations, their frequency and severity - all this presents a huge challenge to everyone with MS.

Employer Reasons

The actual situation at work may be far from ideal, with reasonable accommodations not satisfactorily made, either because the employer will not, or maybe cannot, make the adjustments for the employee with MS. The workplace may be such that reasonable accommodations cannot be made (perhaps the company cannot afford the extensive alterations necessary; perhaps the alterations would not fit into the existing building and so on).

Employment Reasons

The nature of the particular job may now present insurmountable barriers to the employee, because of worsening MS and/or change in the job with the passage of time.

Personal Reasons

Everyone's personal circumstances do alter from time to time and to work for financial gain may no longer be appropriate or desirable.

But Before You Go

It is eminently wise to involve a health professional from the MS Society in the process of the person with MS leaving the paid workforce.

Superannuation

Most superannuation schemes are set up to provide benefits in conjunction with the members' contracts of employment. Others are run by banks and insurance companies.

[Law Handbook 1996, p.226] Superannuation schemes are not necessarily the same as one another and it is of great importance that as a member of a superannuation scheme you understand the details of the particular policy that you have accepted with your signature. Broadly, there are two types of superannuation funds: those where the employer and employee both contribute financially and the money is held in trust for the employee, generally to have upon retirement; and those where the employer alone is the contributor.

Here are several helpful points:

Medical Retirement

In order to take medical retirement from work and to have access to your financial entitlements, a medical examination is usually required by the employer and/or the superannuation fund. It is important to find out what constitutes medical retirement in the particular occupation or industry that you work in - that is, what medical assessments are required? What effect will medical retirement have on entitlements, exclusions or limitations as outlined in superannuation provisions? This includes both life and disability components.

We recommend that you discuss these considerations carefully with the relevant insurer or fund manager and perhaps a union representative, if you have one. It may also be helpful to clarify your situation and entitlements with an independent body. [This paragraph courtesy of the leaflet: Employment Support - What Options Are Available? Sydney: Multiple Sclerosis Society of NSW, 1996]

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Phase 5: Following paid work: what next?

If you, the person with MS, choose to leave one paid job, there is no reason why you cannot find another more suitable job. You may decide to do further study or re-train to acquire new skills and then seek a different type of job from the one you left. You may decide to work as a volunteer in an area where your particular skills are valued. You may be delighted, now, to be free to follow a hobby and do all those things you never had the time to do before. THE CHOICE IS YOURS!

References

Employment Support: What Options Are Available? Sydney: Multiple Sclerosis Society of NSW, 1996.

Hodgkinson, Sarah: A Guide To Staying In Work: Employment Issues. London: MSS, 1996.

The Law Handbook 1996: Your Practical Guide To The Law In Victoria. Fitzroy, Vic: Fitzroy Legal Service, 1996.

Parsons, Ian: Disability Awareness And Disability Discrimination Law: A Training Manual. Geelong: Villamanta, 1996.

Rumrill, Philip D: Employment Issues And Multiple Sclerosis. New York: Demos, 1996.

Source - Information Sheet 5 - Working with MS. © 1999, The Multiple Sclerosis Society of Victoria. Rev. 10/2000

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