Coming Out at Work: An Invisible Illness Perspective

After posting on Monday about the ignorant people who believe that disability is only real if it can be seen, my friend Jamie of Swim Bike Run Live sent me a link to read. From the New York Times business section on Saturday, Katherine Bouton shares the dilemma that those of us with an invisible illness face – to “Conceal or Reveal” at our workplace.

It is not the first time that this subject made its way to me. Just recently, on one of my groups for CMT the question was asked if a professional blog for a freelancer should make reference to the fact that the freelancer has a disease like CMT, or if prospective clients would find this offputting.

I haven’t really talked much (READ: not at all) on this blog about what it has been like for me at work with CMT. But I thought that CMT Awareness Month would give me the chance to share a little about my story about when I “officially came out” at work about having CMT.

The Background

2008 came and went, and in hindsight it was probably the most stressful work year of my life. Due to the financial crisis we had a lot of uncertainty on the homefront, and in the same year my boss changed. My health had taken a real downturn. I was experiencing constant fatigue, anxiety attacks, insomnia, and when I look back I guess that I was very much on “the edge” – I was in a very dark place. When I had previously been in this “dark place” I was able to throw myself into work, to seek solace in busy purpose – but not this time. If anything, work was worsening the picture. I travel extensively, and after each trip I was feeling more and more in a physical hole. My weight had crept up, and I knew I needed to take back control of my life. (I’ve written about this side of the picture previously in my series “Weighty Matters”.)

Besides getting active and looking to triathlon and healthy living to help me to “feel better”, I also spoke with my doctors and agreed that it would be a good idea to inform my employers of my CMT. I could make my health issue known officially, and by doing so I could ensure that I was given things like adequate recovery time after long haul overnight flights. AKA the permission to go home and nap after an overnight flight, rather than heading straight into the office.

So my doctor and I wrote a letter, and I submitted it to my employer. And I unleashed Pandora’s Box.

Unintended Consequences

I learned very quickly that when you inform your employer of a medical issue, they have the right – in fact, the obligation – to investigate. To make sure that they job they are asking you to do will not negatively impact your health. Because if it is deemed to be a negative impact, then they have liabilities.

Of course, I naively thought that I would just be awarded a simple accommodation to get off an overnight flight and take a nap. Instead, I was placed under an occupational health investigation and all my work travel was “subject to management approval” – making the performance of my job very uncomfortable, to put it mildly.

Looking back, I should have expected this. If I were an employer I would have done exactly the same thing – a responsible employer needs to make sure it is not damaging its employees! But at the time, I felt attacked and unsupported. It heightened the stress I was feeling.

As a part of my health investigation I was asked to release my medical records to my company’s investigator. I was shocked. Surely medical files are personal and private?! I had to get comfortable – fast – with the process I found myself in. So I hired a disability employment lawyer. I consented to the investigation and release of my files – but only upon my prior approval due to privacy concerns. I also had to circle back with my doctor – to make sure he was 100% supportive that what I was asking for was a reasonable accommodation, and that I remained able to do my job. Thankfully he was. I met with him and broke down in tears in his office when we discussed the process. It was HARD. And STRESSFUL. The risk of losing my job seemed so REAL, even though my doctor assured me it wasn’t, and that this was all natural and to be expected.

I had opened a true Pandora’s Box. At the time, I wished I could take it all back. That I could shut it. That I could stop what I had started.


What Happened

At the end of the day, the investigation went as anticipated. I was deemed able to work, and everyone agreed that going home to take a nap after an overnight flight was perfectly reasonable behaviour for ANYONE, that I didn’t need to justify this with my medical condition.

But there were unintended consequences. I was deemed to be managing my condition so well that there was a lot less lenience in taking off a few hours here and there to go to doctor’s appointments. I was asked to schedule all appointments during lunch or before or after work, and for those that I couldn’t I was asked to take time off. This was a shift in the way that I had been working. (I started work for my employer in September 2004 – less than 6 months after receiving a diagnosis – and had been attending doctors and physiotherapy appointments with regularity since that time.) It was a perfectly reasonable request from my employer’s perspective, but a huge change to the way that I worked from MY perspective. But rather than fight it – which was legally possible – I adapted.


It’s been four years since I “outed” my CMT to my employer.

Despite almost a year of investigation, changing the way that I schedule my medical appointments, and living with a lot of stress – I would still disclose my CMT.

However, I wouldn’t do it during an already extremely stressful time of my life. I’d do it when I was happy. And when work was going really well.

Why would I disclose? Well, for no other reason that I am who I am. I think it is important to be 100% me at all times.

I work intense hours and very closely with my colleagues. I want them to know why I will excuse myself early from business dinners, why I will decline big nights out in favour of sleep while at work conferences. I want everyone to know that these choices are not about them, not because I don’t value spending time with them – rather my choices are about me taking care of me, for my health. And… I want my company to be supportive of my choices.

Today I have my blog address on the footer of my work emails. I have a link to this blog on my LinkedIn page. I am up front about who I am – CMT and all.

Has it hurt me professionally? I don’t think so.

If anything, the fact that I have CMT and that I participate in paratriathlon is a talking point with my business counterparties. I’ve had people I negotiate with ask me questions about how to learn to open water swim. I’ve had others share with me their passions – I’ve learned about rock climbing and tennis, about university alumni groups and film watching clubs. Old colleagues have seen my blog link, clicked through, and followed up with emails – rekindling long lost friendships. I’ve been told that my LinkedIn profile stands out in a positive way as a result of my blog link.

Being open has led to others being open with me. So would I change that? No. Not one bit.

What I would say though is that if you choose to disclose, be mentally prepared for the disclosure to be tough. Work could get stressful. When you disclose make sure your family is fully behind you and aware of the consequences. Understand your rights under the law (if you can and if you have the financial resources, get a lawyer to help you in the process).

Make sure you are very comfortable with who you are – where you are in your own acceptance of your disability – BEFORE you choose a path of full disclosure. To make others feel comfortable, you need to be comfortable. To find the benefit in being open, you need to be open.

In the interest of openness: if you have any questions at all about what telling my employer was like, if you want to know more details, or want any tips, feel free to drop me an email

I am writing this post in an effort to share a bit about my story of living with CMT. September is CMT Awareness Month. CMT, or Charcot Marie Tooth disease, impacts 1 in 2500 people including me. CMT is a progressive degenerative neuromuscular condition which impacts each person who has it differently. To learn more about CMT please visit Thank you for your support!

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