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Living and working with MS: sharing the diagnosis

Knowing when and how to communicate an MS diagnosis with colleagues can be challenging. Here, one OMSer shares how they approached the task of sharing information about the condition with their employers.

Image by Alex Green

In the first couple months of 2020, a lot was changing in my life. I was a few months into a new job and my team was undergoing a re-structuring initiative. More importantly, I was in the beginning stages of being diagnosed with MS.

I decided early on to tell my employer what was going on with me, if only so they understood why I had so many doctor appointments, requests to work from home and other accommodation needs.

I spoke to my HR representative first. I found her to be empathetic, helpful and understanding. She provided me with all the documentation I asked for and reassured me she would always be available if I needed help, or just to talk. I also spoke to some close colleagues and team members and had the same positive experience.

In February, I learned I was getting a new direct manager. I also wanted to share the news with this person, and I booked a meeting to do so.

The meeting started off OK, but quickly took a turn for the worst. I only got so far as to say that, following an MRI and an appointment with a neurologist, I was in the early stages of what appeared to be a serious diagnosis. My manager interrupted to ask, “what I have” and to tell me that he “can relate to what I’m going through” because of him being “a hypochondriac”. Disappointed, I quickly pivoted to say that I would have more appointments coming up and left it at that.

After this experience, I decided to approach my disclosure process in a more organized way. I made a list in a notebook of all the people in my life I wanted to share my diagnosis with. I worked my way down the list, having one-on-one conversations with each individual where I laid out the information I was comfortable sharing, what I needed and expected from them and asked they did not share this information with anyone else, without checking in with me beforehand.

In time, I’ve grown a little more comfortable sharing this news and I don’t keep track of the people I’ve told in a notebook any longer, but when it was still fresh, I found this method helpful and reassuring in keeping these conversations organized and, to a degree, controlled.

In retrospect, I remember something I read in my early research on MS that really stayed with me: once you tell someone about your diagnosis, you can never take it back.

Months later, when I discovered OMS and Professor George Jelinek’s book, the flip side of this idea really stuck with me too. He says, “Telling others about the diagnosis of MS can relieve the heavy burden of keeping secrets.” I’ve found this to be true and any time I trust somebody and deem it important to tell them about my diagnosis, I do so in a clear and controlled conversation. As Professor Jelinek also states in his book, “There is a significant cost to keeping such a secret.”

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