The experience of many people diagnosed with MS provides evidence that careers can continue to develop and grow and that employment choices often remain varied and exciting. The Australian MS Longitudinal Study has documented evidence that the majority of people with MS who leave paid employment do so due to their symptoms, especially fatigue, rather than any unwillingness by employers to negotiate changes to accommodate special needs. The first point of decision-making about employment may occur months, years or even decades after diagnosis. Whatever the timeframe, planning ahead is important.
Before deciding to leave employment Prior to deciding on a change in employment, it is important to carefully consider many factors and to take some time to do so. A hasty decision following a diagnosis of MS may not lead to the best solution.
It is also important to give oneself time to see if adaptations or accommodations could reduce the need to leave work.
Practical planning
Planning for the future is an accepted part of life today. People have plans for their future employment, their financial security, their recreation and leisure activities, and for their family life.
When people are diagnosed with MS, they are forced to review all their preconceived plans, and each person’s journey with MS is as individual as they are.
It is important that each person carefully considers their particular financial circumstances as well as any government support available and how this will meet the financial commitments of the individual and their family. These vary from country to country, as do pensions and other income supports. Future housing and accommodation requirements are also an important consideration for some people with MS and their families. Help with financial planning may be available from MS societies or professional financial advisors.
It is also important to consider the emotional impact of stopping paid work. Some people miss the routine a job can provide, as well as the social side of working with other people. Planning ahead can help reduce the impact of finishing paid work on many levels.
Avocational planning
Avocational planning addresses those aspects of life beyond paid employment and becomes much more important to individuals who have been diagnosed with MS. For many, this diagnosis comes at a time when they are fulfilling their key employment objectives and preparing for a long and rewarding career path leading to a retirement of travel, leisure and recreational activity. Financial investment, family, lifestyle and housing choices need to be reconsidered by many people with MS, as do current and planned recreational goals.
The importance of avocational planning
Like all aspects of life and career planning, planning for life beyond paid employment is important. It establishes non-employment goals that provide something to look forward to and a reason for getting up each day in retirement. For people with MS, retirement can come much earlier than their original plans or expectations, and with their diagnosis comes a need to re-evaluate those plans.
Avocational planning is most effective when undertaken with immediate family and other friends and supporters within each individual’s networks. Ideally, the best planning is a team effort, involving the individual and those closest to them, in conjunction with relevant health and medical professionals, financial and career planning professionals, and individuals who can give advice on recreational and leisure activities. This ensures that the person with MS is able to make decisions with all the necessary information.
Planning for life beyond paid employment Opportunities for continued participation in community life are an important part of avocational planning. Individual characteristics such as personality, existing hobbies and recreational passions, and family responsibilities should be considered along with accessibility and availability of a range of activities in the local area. Alongside a person’s hobbies and recreational pursuits, more “formal” avocational options can fall into two broad categories: activity programmes for ongoing personal development and volunteering for the benefit of others.
Recreation and personal development
Many local communities provide a range of creative and purposeful avocational opportunities for individuals to explore and experience, for example creative arts programmes (see page 16). Others enjoy spending more time on hobbies and adjust their expectations to suit their ability levels.
Another key area of personal development could be physical activity and health and wellness.
People with MS are generally aware of the health benefits of being physically active. Planning ahead to identify activities and programmes, such as swimming and exercise groups, which are local and suited to individual mobility and support needs, can be very rewarding.
Volunteering
For people with MS, volunteer roles within MS societies and other community organisations can provide a sense of purpose and fulfilment that matches or exceeds that which has previously been associated with paid employment. Generally, volunteering activities can be done on a part-time basis and can be tailored to the available time and skill of each person, regardless of whether their time constraints are related to other commitments or fatigue.
Avocational planning can help link volunteer activities with the person and their skills. Attributes that characterise an individual’s work life may still be relevant in their non-work activities. For example, “workaholics” may be highly valued by volunteer coordinators because they are reliable and available and willing to maximise their involvement within the limitations of their disease if there are any.
Fundraising events provide a range of opportunities for people with time and energy to contribute.
Most MS events have a dual focus on raising funds to expand services for people with MS, as well as enabling people with MS to participate. Other nonprofit or charity groups may also offer opportunities for fulfilment.
Conclusion
Successful avocational planning ensures that individual needs and aspirations are the focus of activity rather than disability, barriers and limitations. At some point along the journey with MS, each person becomes aware that life and living still provide valued and valuable life experiences, beyond paid employment.
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