People living with MS are concerned by ability to keep their job, ability to progress in their career, completing assignments at work.
Does a diagnosis of MS mean the end of a person’s working career? Does it mean that they cannot achieve any further progression in the job that they have already built experience and knowledge in?
Jemma, John and Monique’s stories show that while the symptoms of MS changed the way they approached their work, it did not stop them from progressing in their careers.
Diagnosed at age twenty-six, early in her career as a Nurse, Jemma realised there were some choices and decisions she needed to make with regards to managing her MS and having a fulfilling work life.
Jemma experiences mostly ‘invisible symptoms of MS’. Fatigue, pain and sensory changes (numbness/tingling) in her face and lips are her main symptoms. When Jemma was diagnosed she was working as a Clinical Nurse Educator, mostly on the wards of a hospital. She was required to be on her feet a lot, and she was working shift work. Jemma soon realised that longer term if she wanted to look after her health she needed to stop working night shifts as the fatigue associated was just too much. An opportunity became available within the Education Department for a role that was 9am - 5pm, and she jumped at it. Jemma believes had she not been diagnosed with MS she wouldn’t have considered this role, however given her circumstances she felt the change was necessary.
Jemma reports she thoroughly enjoyed the new job and her MS took a back seat. She has since been given opportunities to advance in this position and doesn’t feel her career progression has been affected at all. Recently, Jemma has been given a more senior role and opportunity to lecture at a local university in her field. This has led to her making the decision to commence a part time master’s degree while working full time, with view to moving into health administration field.
Jemma believes that the following have been integral to her managing her MS and having the confidence and capabilities to pursue her career goals:
- Thoughtful planning and routine with regards to managing fatigue and activity levels each day at work.
- Utilising flexible working arrangements such as working from home or starting later to avoid long drives in city traffic.
- Utilising employer provisions for study leave.
- Good support from her line manager, family, neurologist and GP.
- Assistance from MS Employment Support Service for symptom management advice and organisation of Job Access Employment Assistance Fund ergonomic equipment.
- Being cautious and considerate of MS symptoms when making career decisions and avoiding roles that require too much physicality.
- Planning and using annual leave and sick leave to ensure she is always at her best and most productive.
John is somebody who despite the effect of MS on his job, has found a way to progress his career.
John is currently employed by a government department in a role that he has been in for the past 3 years. Prior to this he was employed as a firefighter for 20 years initially in an active role and then in a more senior project management role. He has been diagnosed with MS for a number of years and his symptoms currently include neuromuscular weakness in both legs (requiring a wheelchair to mobilise), neuromuscular weakness in one hand, fatigue and heat sensitivity. A year ago, John requested support from the MS Employment Support Service (ESS) as he was having falls when transferring in workplace. At the same time, his employer wanted to assess what John’s needs were in the workplace and arranged for him to have an Independent Medical Assessment. The MS Employment Support Consultant (ESC) was able to accompany John to the assessment and point out to the Assessor the areas where specialist equipment and workplace modifications could be provided to minimise the effect of MS on his ability to do his job. Based on this the Assessor made recommendations about what John could and could not do in the workplace and also recommended that he be allowed to work from home.
Due to security reasons John’s job could not be done from home so the HR team tried to find another role in another government department. Still having his contacts within the Fire Brigade, John contacted them and explained his situation. Recognising his knowledge and strengths as an asset, the Fire Brigade approached the government department that John worked for and arranged for John to be seconded into a role that allowed working from home. The MS ESC made applications to Job Access to set John up with a home office (desk, monitor, voice recognition software) so that John could perform the role without barriers.
Today John’s role within the Fire Brigade has evolved and he has been promoted. The secondment has been so successful that the Fire Brigade are going to employ him ongoing. John could not be happier being able to continue working in his field of interest.
Monique was diagnosed with MS 13 years ago. There was initial emotional shock, as she was overwhelmed by the challenge of dealing with the impact of MS symptoms and what it would mean for her everyday life, now and in the future. When diagnosed she was working full-time as a consultant to investment managers and their teams, in the superannuation industry. Her symptoms began to increase slowly, including weakness and painful spasticity in her legs, problems with balance, and fatigue after exertion. It became more difficult for Monique to travel to meetings around the CBD and interstate in other cities, which was a key part of her role, and she reduced her hours from four days per week to two days per week.
Monique kept modifying her work according to what her body could cope with. However, there was a high degree of stress involved with getting in and out of the city and working full days - even though she had already alleviated some stress by working less hours and being choosy about the organisations with whom she worked.
To manage her MS, Monique tried Homeopathy, Kinesiology, Pilates, a new diet...she rediscovered the benefits of daily meditation and explored Somatic Psychotherapy and AcuEnergetics. Monique says: ‘These modalities helped me with a healthier process of emotional regulation – I had previously pushed down feelings of fear and anger but now by acknowledging the feelings around loss …MS has brought me back to be in my body...rather than just my mind.’
In 2010, she began a three-year experiential training in contemporary Somatic Psychotherapy. Monique says: ‘I always figured that I could be a psychotherapist - even if the time were to come where I was wheelchair bound.’ She went on to do a Masters in Counselling and Applied Psychotherapy in 2013. She reduced her work hours in the investment industry down to one day each week, while she built up her practice in psychotherapy. Monique says that by retraining in the modalities that had helped her, she began helping others....and she found new meaning in her work and life.
Monique indicated her career change has the following advantages:
- It is emotionally rewarding: ‘Together I walk with my client on their journey to understand and illuminate their experiences and to explore new ways of being in relation to themselves and another.’
- It is flexible: ‘I am really fortunate that I can work my own hours now and work from my own private space at home. I no longer have to commute and sit in peak hour traffic.’
- There is less technology: ‘I no longer have to sit in front of a computer. I have a human interaction.’
There is no denying that MS can present limitations to a person’s ability to perform some tasks in the work place. What is important to remember is that barriers can be overcome. With an open mind and the right supports people with MS can make choices about their health, disability and disease management that will still enable people with MS to have a fulfilling career.
From the examples above, there are some strategies that may help a person to manage their situation to achieve the best outcome in their career. These include:
- Build a good relationship with your employer.
- Be open with your employer about your situation and give them a chance to present some options to you.
- Rather than think about “can I or can’t I do an activity”, think more about “HOW to do the activity”.
- As much as you can try to plan ahead to better manage MS symptoms in the workplace.
- Think outside of the box. Just because you have performed one role for a long time does not mean that you need to stay in that same role forever.
- Identify your transferable skills so that you can identify other roles that you may be able to do that are more suitable.
- Work on building networks and contacts within your industry who may be able to link you in with career opportunities – this may include informal contacts, joining professional associations, or using networking websites e.g. ‘Linked In’.
- Utilise career planning services and mentors to seek advice, guidance and a new way of looking at your opportunities – there are private, fee paying career planning services, and you can access career advice via some professional associations, universities and TAFE colleges
- Don’t be afraid to ask for assistance from organisations such as the Multiple Sclerosis Employment Support Service, or the MS organisation in your state.
- If you need to work from home as an adjustment for your disability – Job Access may be able to assist with workplace modifications (home office equipment) via the Employment Assistance Fund
- If you are thinking about re-training or up-skilling – most universities and TAFE colleges have Disability Consultants who can help with disability provisions – speak to them first about how they can help you to get through the course
It is also important to acknowledge that with a diagnosis of MS there is often some measure of sadness and grief…and it can be hard to move forward if you don’t acknowledge this. You may need to create for yourself some opportunities to process any feelings of grief for the career you planned to have…so that you can move forward and embrace the career opportunities that may lie ahead of you. This might be as simple as talking it through with a friend, journaling…or getting some help from a counsellor. If you work for a larger organisation, you may be able to access counselling via an Employee Assistance Program. You may also be able to access the Better Mental Health Care Program, via a GP referral, for Medicare subsidised Psychology sessions.
We hope that the stories above have demonstrated that MS does not mean that your career needs to come to an end…but it can take a new direction, with the option to learn some new skills and make the most of your existing skills and experience. The important thing is to keep your mind open to the new opportunities that are available to you…and don’t try to do it alone, get some help and support along the way!
Juliet Fifita – Employment Support Consultant (Occupational Therapist)
Jeffrey Lawrance – Employment Support Consultant (Occupational Therapist)
Elizabeth Stenhouse – Employment Support Consultant (Occupational Therapist)
Renee O’Donnell – Senior Employment Support Consultant (Occupational Therapist)