Working with MS
Open Door - August 2007 pages 8-9
Gail Townsend, research occupational therapist, Buckinghamshire PCT
Gail Townsend has been conducting an MS Trust funded research study into improving support to maintain people with MS in employment. 97 people took part in the study, completing a questionnaire or taking part in focus groups. Issues raised by the study also informed the new MS Trust book At work with MS (see bottom of the article).
The ups and downs of working with MS
Work occupies a large part of our lives and means different things to us at different times. Voltaire[1] went so far as to suggest that "Work saves us from three great evils: boredom, vice and need." Work can be beneficial in many ways, not least financially, allowing people to be more independent and fulfil a valued role within their family and society. Other benefits of work that participants in the study identified were:
- Having structure to the day – a reason to get up in the morning
- Stimulation and social contact
- Feeling 'normal', doing what other people their age are doing
- Taking one's mind off MS and other problems
However, living with MS can make work difficult. The impact of work on fatigue was the most common negative aspect reported, and the consequences of fatigue on other parts of their life was explained by one participant:
"The days I work, I fall asleep more, ie straight from work, and miss out on family time."
MS is a very variable condition, not just from day to day, but during the course of the day too. So people with MS can have worries about work and the people they work with.
"It is getting very hard to perform as well as I did. My job is very pressurised and my employers do not understand MS fatigue."
"I worry that people feel sorry for me."
"I'm concerned about not being able to do my job and letting people down."
Telling people at work that you have MS
Revealing a diagnosis of a long-term condition like MS is recognised as being a difficult choice[2]. Almost three quarters of the people who completed the questionnaire had told most people at work that they had MS, and a further one in five had chosen to tell only their manager and close colleagues. However, people who were self-employed did not tell clients they had MS.
"You can't tell the clients you have MS – they think you will be unreliable and move their business elsewhere."
Support to stay in work
One of the reasons people choose to disclose they have MS can be that it enables them to get support or equipment to carry on doing their job. However, despite more than 90% of respondents having told their manager and colleagues, only about half had received any help or support. For example, only half of the number who said that fatigue was a problem for them at work said they were able to take breaks to help them manage the symptom.
On a more positive note, people with MS appeared to be able to take advantage of a more flexible approach to working. 78% were able to work flexible hours so could avoid travelling at rush hour and a third were able to work at home for some or all of their job.
People at work can have a big influence on the experience of working with MS, and while most people with MS thought their managers and colleagues were supportive and sympathetic, over a third felt that MS or disability issues were not understood.
"They treat me as one of the team, as I would expect. No special treatment but I know they understand my situation."
"They [colleagues] are supportive but I had to inform them of my needs and explain how they could help."
"He [manager] is great with me as an individual but does not generally have time for anyone who has a disability – or 'who sees themselves as a victim'."
To work or not to work?
In this particular study fewer than one in five people had stopped working. While most felt they had control over the decision, one participant highlighted how difficult the decision was.
"It was mental torture to come to that decision, I had worked so hard to be a [professional]."
Not working had both good and bad aspects. Symptoms, particularly fatigue, seemed to improve or be less severe. People also felt they had more time and energy for activities that they enjoyed or that meant a lot to them. The more negative consequences were more financial worries, feeling lonely and isolated, and finding it hard to structure the day.
Conclusions
Work, like MS, is complicated and variable, and there appear to be few hard and fast rules that govern working with MS. While MS and its symptoms undeniably play their part, there are so many other factors to consider:
- What does being in work mean to you?
- Does your job allow you to work flexibly?
- How well do your abilities match with the demands of your job?
- Can reasonable accommodations work for both you and your employer?
- What commitments do you have outside work?
These are only a few questions of the many that may arise when working with MS. What is clear from the people who took part in this study is that if you want to work you might need tenacity and creativity to find the solutions that work for you. But if the pros outweigh the cons it is possible to carry on working with a long-term condition like MS.
These issues and more are discussed in the MS Trust's new book At work with MS discussed in another article in this issue.
Read the article on the At work with MS book
References
Voltaire. Candide. 1759
Allen S, Carlson G.
To conceal or disclose a disabling condition? A dilemma of employment transition.
Journal of Vocational Rehabilitation 2003:19;19-30.
Are you in paid employment?
Would you like to be involved in a project developing the MS Workbook - a resource aimed at helping people with MS stay in employment?
If you are interested and would like more information, please contact Gail Townsend
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