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To tell or not to tell


Help prepare for the questions that may arise in the workplace which relate to your MS.  Know your key messages to avoid awkward moments and difficult conversations with your colleagues

A diagnosis of multiple sclerosis can be an emotional time and often requires a journey of acceptance and understanding.  The same can be true for those you choose to tell – family, friends, colleagues and employers.  Unfortunately there is no formula for dealing with the varied responses of others, however it is worth considering what these responses may be when deciding what information to disclose, when to disclose, and to whom.

If you have no visible signs of multiple sclerosis or are not experiencing any work-related difficulties you may wish to delay disclosure or not disclose at all.  Non-disclosure in the workplace may be a tactical decision based on a fear of discrimination and missing opportunities, or your desire for normalcy and for privacy, and this should not be viewed as lying.  Silence may be the answer you are looking for in this situation.

Legally you do not have to disclose your multiple sclerosis to your employer unless your symptoms (including side effects of medication) are likely to affect your capacity to perform the inherent requirements of the role or present an occupational health and safety risk to you or others.  For example, if you are a truck driver and experience visual disturbances or your pain medication makes you drowsy, you are required to tell your employer as that employer has a duty of care to you and those around you. 

Some employers will ask you for a pre-employment medical assessment or questionnaire.  You are not obliged to complete this although refusing may raise some concerns for the employer.  In this situation it may be advisable to speak directly with the employer about your multiple sclerosis to ensure control of the content of information provided and to explain relevant symptoms. 

However, work may be an area of life where you can temporarily cast health issues aside and focus on using your skills and training to enjoy the satisfaction and validation that comes with a job well done.  This sense of normalcy is often the result of careful planning and preparation involving fatigue management, attention to diet, and a rigorous and balanced rest and exercise regime.  The ability to work is therefore often hard-fought and, after due consideration of safety, it is entirely the preserve of the person with multiple sclerosis to decide what information they disclose and to whom.

It is also worth considering that whilst you may not be sharing the ‘whole truth’, this is likely to be true for some of your colleagues as well, and the behaviours they demonstrate could be the result of managing a situation (an illness or life event) that you are unaware of.  You may have feelings of guilt for not telling the whole truth but this can be unduly influenced by your own belief about your colleague’s view of telling the truth.  It’s okay to set your own standard for privacy.  The amount of information you share should be dictated not only by the safety of you and your colleagues, but also coupled with your personal comfort level.

It is often the invisible symptoms of multiple sclerosis that make everyday life challenging.  Common symptoms such as fatigue, pain, temperature intolerance and cognitive issues can impact daily activities and work tasks.  Compensatory strategies, planning, delegating, foregoing special occasions and making excuses are all familiar if you are struggling to make it through to the end of the workday.  The effort of managing symptoms to maintain work productivity may deter you from participating in informal discussions, joining in lunchtime activities or even from attending the staff Christmas party.  You may feel you are unfairly labelled unfriendly or “stand-offish”. 

Colleagues can also be quick to speculate and ask probing questions.  Staying committed to your standard of privacy will form part of your response but preparation for this scenario can reduce the need for fast thinking and the risk of being caught completely off-guard.   Consider having short and consistent responses ready to explain your signs and symptoms of multiple sclerosis.  The more intricate or detailed the explanation, the easier it is to be ‘caught out’.  Avoid providing specific details as your story may not remain consistent; a closed, short and direct response may forestall further questioning.  Slurred speech?  ‘I am tired’.  Exhausted? ‘Not sleeping as well as I used to’.  Specialised office equipment?  ‘Back and shoulder pain’.  Difficulty using stairs?  ‘Long-term hip/knee/ankle stiffness, had it checked by doctors and nothing can be done to fix it’. 

Also consider the relevance the information you choose to withhold has to a situation.  If the information concealed through silence is irrelevant to a situation (and not placing you or others at risk and not breaking the law) then not disclosing the information may simply make life more pleasant.

On the other hand, disclosure of your diagnosis of multiple sclerosis can have distinct benefits.  It provides the opportunity to demystify multiple sclerosis through education.  It can provide a chance to negotiate adjustments to your workplace or duties.  It may reduce the stress induced by covering up signs and symptoms of multiple sclerosis, absences from work and medical appointments.  Sharing information about your multiple sclerosis may also assist colleagues in understanding and supporting some of your specific requirements and can improve your working conditions.  When considering whether to disclose, it is worth considering what others may see already without understanding the reasons behind what they observe.

Disclosing your multiple sclerosis in the workplace can be daunting.  Question why you have chosen to disclose and what outcome you would like.  Consider the symptoms that are impacting your work, what support you require at work and what strategies will assist you to manage these symptoms.  Determine who requires this information and who in the workplace is going to best assist you in achieving your desired outcome.  It is well worth researching disability management policies your employer may already have in place as this may influence whom you approach to disclose.  The employer representative may not have prior knowledge of multiple sclerosis so be prepared to answer seemingly insensitive or inappropriate questions – you may be able to turn this into an opportunity to educate them about living and working well with multiple sclerosis.  You can maintain control of the situation when you feel prepared.  

Be selective about the information you wish to present - your employer may not need to know all the details.  Highlight your strengths and present solid strategies for symptom management in the workplace.  An employer will generally respond positively to a proactive employee with a well-considered management plan.  How you present your information often influences how others perceive it.

Under Federal and State laws, the employer cannot discriminate against or harass you for having multiple sclerosis.  The laws also dictate that “reasonable adjustments” must be made to support you to do your job.   An employer also has a responsibility to maintain confidentiality and cannot disclose your information to other employees without your consent unless there are safety concerns for you or others.  To protect your privacy, you can specify verbally or in writing to your manager who would like to disclose to and who you do not want to disclose to.   You can speak to your Union representative or seek legal advice if you require further assistance with work-related difficulties around disclosure or discrimination.

The following examples may offer an opportunity to reflect on the approach you choose whether for full-, partial-, or non-disclosure of multiple sclerosis in the workplace:

  1. Alice is very reluctant to disclose her diagnosis in the workplace having suffered workplace bullying in her previous role as a classroom teacher.  She is now working part time as a teacher aid and has been employed for seven years without disclosing her diagnosis.  Alice explains her reason for not disclosing is that we all live with all manner of conditions and afflictions so why should she disclose her condition and possibly open herself up (again) to scrutiny and judgement, possibly even loss of employment?   Despite suffering from fatigue, limping on occasion and sometimes requesting time off yard duty in the height of summer, Alice confidently manages the inherent requirements of her role and remains a respected member of the school community.  After relishing the success of this approach in the workplace, Alice is extending this non-disclosure to certain friendship groups and now even limits how much she shares with certain members of her family.  She enjoys being known as ‘Alice’ rather than “Alice, the girl with multiple sclerosis’.
  2. When Angela started using a scooter at work she was happy to explain to colleagues and clients that multiple sclerosis was the reason behind her obvious mobility issues.  Angela soon became frustrated by the attention this generated and quickly decided to limit the information she provided to simply stating she had ‘mobility issues’.  Work provides Angela with the normalcy she craves.  It gives her the opportunity to (mostly) relegate her multiple sclerosis to the backbench while she successfully applies her considerable skills and training to a part of her life that remains relatively unaffected by her diagnosis.  Angela discovered that she could gently deflect unwanted attention by shifting the focus away from her multiple sclerosis and on to the work at hand by using a simple yet effective assertive technique.
  3. Mary-Ann is undaunted by the opinion of others and is open about her symptoms of multiple sclerosis, even the hidden ones.  Mary-Ann’s work is physically demanding and she needs to take regular rest breaks to manage her fatigue.  She wears a cooling vest to lower her core temperature and she requires an undercover parking space on hot days as heat reduces her safe mobility.  Mary-Ann is very willing to respond to questions and advice from colleagues and clients as she views this as an opportunity to educate others about multiple sclerosis as well as to get the assistance she sometimes requires from team members.  She enjoys the full support of her manager and team due to her commitment to her role and the high quality of her work.

Your attitude towards disclosure – or non-disclosure – is likely to change throughout your working life.  It is possible for you to retain control of your situation and working relationships through careful consideration of the type and level of detail of information you provide to others, when and to whom you give this information, and consideration of how this may be used to your advantage in the workplace. 

Imogen Oliver - Employment Support Consultant (Occupational Therapist)
Didianne Dinhmartin – Employment Support Consultant (Occupational Therapist)
Tegan Hanisch – Employment Support Consultant (Occupational Therapist)
Diana Groenewald – Employment Support Consultant (Occupational Therapist)
Alison Miekle – Employment Support Consultant (Occupational Therapist)
Renee O’Donnell – Senior Employment Support Consultant (Occupational Therapist)
Joanne Airey – Senior Employment Support Consultant (Physiotherapist)

The MS Employment Support Service (ESS) is a specialist Disability Employment Service available for people affected by MS in the Melbourne and Sydney metropolitan regions, and the Geelong/Bellarine region of Victoria.  The MS ESS is a team of Occupational Therapists and Physiotherapists that work with clients in managing their symptoms at work, and maintaining their capacity for work.  If you are experiencing MS symptoms that are making it difficult to do your work, and want further details about our service, phone MS Connect on 1800 042 138.