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Revealing My Multiple Sclerosis At Work

Have you been diagnosed with a chronic illness and are struggling with the notion of whether you should tell people at work?

Are you wondering if you should tell your boss?

Do you know if you are even obliged to disclose your condition?

Or would you rather keep this information private and separate to your work?

I was faced with these very same questions when I was diagnosed with Multiple Sclerosis (MS), and it was something I struggled to find an answer to in the first few years of my diagnosis.
MS in the workplace

Initially, I had little control over my employer finding out about my Multiple Sclerosis. I had been away from work for months, and my diagnosis had been discussed with them while arranging my return to work plan.

When I finally returned to work, I had difficulty adjusting. Within six months of my return to work plan, I was made redundant.

I did feel as though my health was part of the reason that not a lot was done to find me an alternative position, despite having worked in a variety of roles for that company over the last 5 years.

After that experience, I decided not to disclose my MS unless necessary.

My symptoms at this point in time were quite mild, so I felt there would be little impact on my work performance anyway.

So best not go there, right?

Keeping my MS private at work

Keeping my MS secret at work

The first few months of my new job were liberating; work was my MS free haven. No one knew about my condition, and I could just be me again. It was actually a pleasure to go to work and shed my MS identity.

I would occasionally make references to not feeling well in conversation. If I needed to explain why I was tired or couldn’t make a social event, I always made sure I was vague. I discovered that over explaining would invite too many questions. I had a few favourite lines when someone noticed I was looking tired.

I’d say “You know that thing that’s going around? Think it’s got me too”.

When you work in an office, there’s always some bug you could blame.

Blaming it on poor sleep was another personal favourite. It didn’t require much stretch of the imagination because it was true, I was sleeping badly. And everyone else was sleep deprived too, so that answer never got much attention.
But I never dared insinuate I had something chronic or permanently wrong with me.

Not telling the boss

Not telling my boss about my MS was a difficult decision. It was also out of character for me. In the past, I had always been very open with my employers. My previous supervisors were the kind of people I could go to for guidance.

By not disclosing my condition I was also unable to ask for support when I had a problem that related to my Multiple Sclerosis. There were things my boss could have done to help my fatigue for example, but back then I was too scared of it being used against me. So I kept those problems to myself.

Disclosing my MS

Over time my symptoms started to impact on my work performance. I found myself having to find more and more creative ways of explaining away problems.

Things came to a head when I started having problems with my memory, I started forgetting and misplacing things, and it was impacting stakeholders. It was so out of character with my past performance, and it was causing me a lot of stress, which only made the problem worse. As a result, my sick days started piling up.

Keeping my MS ‘secret’ had become hard work and difficult to maintain. My boss was concerned as I clearly wasn’t coping. As I had suffered burnout from stress before I decided I better ‘come clean’ before I wound up in hospital.

When I finally told my boss about my MS he understood why I felt I couldn’t tell him, but was glad he knew now and wanted to know if I needed anything in the way of support.

Being open about my MS at work

I decided to be more open from that day. I have found many supportive workplaces over the years. Employers who supported me by adapting my work environment and offering flexibility when my symptoms flared up. I am happy with my decision to be more open about my MS at work, and I believe it helped me squeeze in a few more years of employment as a result.

My thoughts on disclosure

Disclosing a chronic health condition is a personal choice, and both options have advantages and disadvantages. It is a choice that someone should not feel forced to make.

What the law has to say on disclosure

In Australia, it is against the law to discriminate because of a disability, and you are not obliged to disclose your medical condition unless it directly relates to the genuine requirements of the job.

Benefits of disclosure

There are benefits to disclosing your condition, and for me, these outweighed the negatives. Being open about my MS meant I was able to organise workplace modifications which included flexible working options and assistive technology. These changes allowed me to stay employed longer than had I not had them.

Need help and support with your decision?

MS Australia has helpful information and resources that can help with your decision-making process and an employment support service you can call for support.

When deciding if disclosing my condition was the right choice for me, I started off with a good old pros and cons list.

Deciding to disclose your chronic illness

  • Think about the industry you work in
    • What do you think the reaction will be?
    • What would be the outcomes?
      • Worst case scenario
      • Best case scenario
    • What would be the positives of your choice?
    • What are the negatives?
    • Would you be well supported?
    • Would your choice create barriers or reduce them?
  • Do you feel able to cope with the outcomes of your decision either way?

Remember disclosure is a personal choice, there is no right or wrong side here. Do what you are most comfortable with, and what is right for you and your family.

Disclosing your condition to people in your workplace is never an easy and straightforward decision, and requires much thought. Whatever your decision you should feel comfortable and not pressured or pushed into something you’re not ready for.

For me, it felt right that the people I spent the majority of my day with knew about my MS, but that was a decision I had to come to on my own terms. I had previous experience in not having been given that choice, and I can tell you that is never a good situation to be in.

If you have any helpful links about disclosure and legal requirements for your country, please free to share these links.

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4 Comments »

  1. I love this, I agree that’s it’s a common struggle post diagnosis. I’ve been very fortunate and have had managers that were extremely supportive. For me, it helped to be up front so that when I do have a bad day it’s less of an issue. My current manager’s mom suffers from MS so she truly understands.

  2. Brilliant blog post! I completely agree with you. I’ve only had a very small amount of negative responses to having MS in the workplace. I think the hardest thing is telling people! I’ve always made sure HR knows but apart from that I just never knew how to start the conversation. xxx

    • Yeah, it’s a tough conversation to initiate. Worrying about that conversation is far more stressful for me so now now I like to bring it up as early as possible.

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