Disclosing about MS in the work place

Kirk-Brown A, Van Dijk P, Simmons R, Bourne M, Cooper B.Disclosure of diagnosis of multiple sclerosis in the workplace positively affects employment status and job tenure. Mult Scler. 2013. [Epub ahead of print]

BACKGROUND: For many employees with multiple sclerosis (MS), disclosure of their diagnosis at work is seen as a high-risk strategy that might lead to diminished perceptions of their capabilities by supervisors and colleagues, if not outright discrimination. The consequence of this mistrust surrounding the disclosure process is that employees with MS may leave it until too late to effectively manage symptoms at work.

OBJECTIVE: The objective of this paper is to statistically evaluate the relationship between disclosure of diagnosis at work and maintenance of employment.

METHODS: Three annual, large-sample self-report surveys of MS patients prospectively examined the relationship between disclosure of diagnosis at work and employment status. A total of 1438 people responded to all three surveys. Of employed persons in 2010 (n = 946), 673 also responded to the 2012 survey. Of these 673 respondents 564 were still employed.

RESULTS: People who had disclosed their MS status to an employer were more likely to remain in employment in Year 3. The effect of disclosure in predicting employment status remained after controlling for age, gender, hours worked and level of disability.

CONCLUSION: This study provides the first empirical support for the positive role of disclosure in maintaining employment status, measured both as job retention and tenure in current employment.
I am not in a position to comment on the pros and cons of disclosure. I know that my Institute activity aims to employ about a certain percentage of people with disabilities, and they have to make provisions or this. They can only do this if they know. But I am also well aware that disclosure may not be a positive experience. Perhaps read the Stumbling in Flats blog. I wonder if the data would be more skewed by the 270 plus missing.

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  • Re "I know that my Institute activity aims to employ about a certain percentage of people with disabilities":

    I'm interested in what the procedure or policy is for this-
    For example, how do you decide if somebody is disabled enough to be employed under this provision, or too disabled to do the job?
    Would it help MSers get jobs? They often struggle with handicaps without being visibly disabled

    • i do not want to comment on HR issues but i guess there can be positive descrimination if two people have the relevant skills.
      i heard there was a metric whilst on a course
      soon we will be encouraging men to apply for jobs as science is now eighty percent women. thirty years ago it was the opposite way round.

  • Speaking of thirty years ago… I’m sure attitudes have changed somewhat over the past 3 decades but personally, I doubt if conditions have altered dramatically as this study would seem to indicate. During the mid 1980’s my wife applied and was turned down for employment 42 consecutive times at 42 different businesses in Midwest USA. However, the empathy they expressed for her MS affliction was so touching. I recall one young interviewer nervously asking if MS was contagious!

    My wife believed she was well qualified for the jobs she applied for and rejection began taking a psychological toll. I asked if she always disclosed MS. Yes, as a matter of conscience she felt she should. I suggested next application omit that disclosure. 43rd application (only one omitting MS) and wouldn’t ya know she got the job! Coincidence? Of course, of course, after all discrimination is illegal.

    Has society changed? Yes. Has it changed dramatically? Doubtful. Unfortunately, faithfulness to the bottom line and defensiveness to any possible threats thereof ensures discrimination will endure in many, if not most business situations. At least in the US. But I could be wrong. Perhaps, human nature has made a quantum leap toward divinity in the last few years and I just didn’t notice it.

    I’m not certain if this study was confined to Australia. Perhaps, the conclusions are best applied exclusive to locations where the three studies took place. Some areas of the globe may be progressing in this area faster than others.

    • I think size of an institution also helps as they have the resource to make adaptions to the work environmemt. During intrrviews we have to take training with regards to diacrimination agists etc and some questions we are simply are not allowed to ask.Health issues will be assessed by occupational health.Being international im the EU we sometimes conduct interviews over the phone and yes sometimes they do get the job if we think they are the best person for a job.

  • Well, I am now in the position of having to disclose my MS…slowly. I had to take medical leave and it was a long one and unplanned. It ended up being 2.5 months. It did turn out that I had new brain lesion activity, which shouldn't have really been a surprise but I never see it coming. I had not disclosed my MS when I was hired 2 years ago, and I had never classified myself as disabled.

    The company I work for is a huge, multinational company, based in Japan but I work in the US. They are very involved with charity work and hiring the disabled, yet I did not feel that I wished to disclose my MS.

    I recently returned to my job. Co-workers are still cautiously approaching me wanting to discuss why I was out for so long. I have been typically evasive.

    I work with a diverse, multi-national group of people. Most of my coworkers are from many different countries – US, Russia, Japan,Korea, India, the Middle East, South America. Many of them are used to having strong family and community ties. Things like illness, deaths in the family, etc, are openly discussed among them, at work and with friends. I am pretty closed off in that respect- a very private person.

    I have decided to take the opportunity to disclose my condition to those of my co-workers who have approached me – on a one on one, case by case basis (coffee for a few minutes out of the office).

    So far, since my return, I have disclosed my MS to 3 co-workers. It's not easy – I don't see myself as a poster child for MS, but I don't think that it is anything I should be trying so hard to hide anymore. I work in a close-knit work group and I don't wish to let the possibility of misunderstandings or possible resentment crop up (it almost seemed like I was on vacation) and interfere with the really great working relationships that exist.

    My boss and I still need to do a formal sit down (hasn't been time, due to schedule) because if I am going to be able to put his mind at ease over the leave I just took and my ability to continue to do my job, it's time for me to be less ambiguous than "I have a condition that causes me fatigue."

    My group HR reps know the gory details, because they had to be the final sign-off on my back to work authorization. The majority of my dealings for the medical leave went through the corporate HR (which is a different level – it protected my health info from reaching my group HR until I gave the green light). All in all, I was very lucky to be working for a company that wants to work with me to help me transition back and continue to work.

    I know this isn't always the case. I think that is a big part of the reason why I was so afraid to take leave or ask for accommodation, and kept pushing myself through the last year without saying anything until I bulldozed myself into the wall and crashed. Now that I have the opportunity to return to work, the burden is on me to keep a better handle on my MS, and to disclose to my boss and my HR reps, what I need to keep going when the symptoms start swatting me about or the relapses unexpectedly happen.

    One of my coworkers asked me after I disclosed my MS to him, what can we do to help? I think at this point, the question is, what can I do to stop getting in my own way with the whole thing and start better utilizing the resources and accommodations that are available to me?

    • Really good post above.

      I have to say, I'm fortunate in that, presently, my MS symptoms are more of an annoyance than an inteference with my ability to do anything. They also tend to be worse in the latter part of the day, evening onwards. I therefore haven't told anyone about my MS apart from my wife. That includes my friends and family as much as it does my work. The reasons are the same as for many people – I hate the idea of becoming known for my MS. It's a label I haven't got comfortable with myself, let alone from other people – and whilst people mean well, it is almost impossible for people not to think of you as 'the person we know with MS'.

      I think part of the problem with this is the persistent portrayal of only the worst of the condition amongst the media, and, I'm afraid to say, MS society, trust etc and even, to a degree, sites like this one. If you tell people, including work, that you have MS, they pretty much always assume you're going to be seriously disabled – and relatively quickly. For some, of course, that is the tragic reality, but it's not the real face of the disease at large. Wheelchair use doesn't become a statistical likelihood (i.e. >50%) until over 30 years post-diagnosis on the least favourable studies and never on others. Even cane use doesn't become likely until 26 years on one of the more recent, large scale natural history studies. Many MSers are highly successful individuals – we have a current MP with MS and a past one as well, one of the country's top lawyers has MS, the Australian of the Year and highly successful businessman Simon McKeon, has MS. The list is endless, yet this is not the image of the condition that suits fund raisers (which I can understand) or the media (who like to create 'scary' stories to attract readers). I just think, and I've posted about this before, more should be made of these kind of positive stories. Not ignoring what can happen on a more negative slope and not for a second discouraging DMTs which help towards a positive outcome but a more balanced portrayal of the disease helps people's employment prospects and it helps newly diagnosed people come to terms with things. We should be educating people that MS is a very varied disease and many people do very well and remain highly functioning for many years with it. That message would make employers much more likely to take on someone with MS (or not usher them out when they find out). In a former role, I was an owner of a small company with around 70 employees. Before my MS diagnosis, if someone had come to me with MS, I'd have immediately assumed the worst because I was ignorant (just as I was when I was first diagnosed out of the blue). That shouldn't be the case.

    • Thank you for this comment. I had to tell my employers after diagnosis as I was so ill. I was helped by my bosses. When I lost my sight my colleagues gave me a lift to work. When I lost the use of my hands they arranged for my work to be typed by a secretary. When I couldn't manage to get to the office entrance I was helped with access to another one. When we moved office, I given a desk with easy access to the toilets. It was not all easy before the DDA. The colleagues and bosses closest to me, knew me as a hardworking employee that didn't let my illness get in the way of a good job. I struggled at times, but on reflection I would not change anything. I did not spend time chasing cures and have had a happy life. I've had MS thirty five years and now I have SPMS. The people I know that have MS are all hardworking individuals.

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