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Why I've chosen to hide my MS from co-workers Add to ...

I have a secret I keep from my colleagues. Only close friends and family know. It's not one that's illicit or shameful. It's just intensely private and crushingly grounding.

Work is one of those places where you are supposed to have it all together, be on the ball, appear calm, cool and collected. And yet, on a recent morning, I had a moment of panic. Although I may have looked "normal" on the outside, my breathing was rapid, my heart was racing and my head was throbbing.

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This reaction wasn't caused by anything dramatic; it was simply the act of stepping over a threshold. I was touring health-care facilities with my team to determine potential space for patient care, but when we walked into the multiple sclerosis clinic, my heart and head started to pound.

It was a ridiculous, irrational reaction, as I had been to the clinic before - as a patient. I felt like the brown rabbit caught on the snow-covered field. Excruciatingly vulnerable, just waiting for one of the clinicians to come out, catch me pretending to be a fully functioning person and shatter my illusion.

In December, 2002, I felt a little funny from the waist down. It was like my legs were wrapped in rubber. I put off going to my family physician because it was Christmas. When I finally got around to seeing her in January, I described the symptoms, which I thought were caused by a pinched nerve. She told me that she needed to send me for tests to confirm, but it could be MS.

Alone in the room with the doctor, I felt like I had an out-of-body experience. Like she was talking to someone else and I had sympathy for the person to whom she was giving the bad news. It couldn't be me. I was active and thriving, had two young children and my whole life ahead of me at 35.

I was diagnosed in February, 2003, after a flurry of tests and assessments revealed that I had lesions on my brain stem and spinal cord. The news was devastating. The certainty of the diagnosis and the uncertainty of the disease path were paralyzing.

Interestingly enough, a lot of the quirky physiological symptoms that I had been experiencing since I was a teenager were signs of early-onset MS, such as the feeling of cold water being poured inside my head or lightning bolts shooting out of my hands when I moved my neck left or right. I learned that both are classic forerunners of the disease.

When I was first diagnosed, I felt the need to disclose it to others. I felt broken and thought that everyone around me could tell that there was something different about me. There wasn't, of course - there was just more clarity about why my hands, feet and head felt funny sometimes.

But honest disclosure did not benefit my professional circumstances. I was passed over for promotion twice, even though I was the more qualified candidate. I was told that it was because of concerns over my health and my ability to withstand the stress of the new position, which came with more responsibility. It was an excuse.

But what that experience taught me was to keep my little health secret to myself. It dispelled any responsibility I felt to tell anyone any details related to my condition.

So now, eight years later, my MS is largely managed with medication and I have only had five serious attacks since I was diagnosed. I have recovered respectively well from each one, with limited decline in overall function. I haven't been able to feel my feet or hands since 2003, which makes it challenging to type or walk with some grace. But I can use my hands and I can walk, so I take the gifts where I can get them.

I still have days when it takes a whole lot more effort to accomplish something I mastered with ease in my 20s. It's a sombre moment that reminds me of my mortality when I have to use strategies to pick up small objects, since my fine motor skills are not what they used to be, or when it takes me three attempts to read something before it sinks in and makes sense.

These strategies are fine when I have the time and space. It gets risky when the pace picks up and life becomes more intense at work or at home. As I drop more things, experience more falls and struggle for the appropriate words, my secret challenge becomes more apparent, if only to me.

As I walked through the clinic and the in-patient unit, seeing all the equipment and individuals being treated for MS-related conditions, I started to fall into the pit of lamenting a futile destiny. Regardless of the research advances, the clinical-care excellence, the solid support networks that surrounded me, the reality is that I still have a body that could tip either way. I have daily moments of terror and despair when I think about the dark potential of growing older and the prospective burden on my family, on my husband.

My colleagues didn't notice my reaction; no one coming out of the clinic recognized me. My secret remained safely locked away in my head. But on days when I am exhausted and my hands and feet are on fire, I wonder how long I will be able to keep up this pretense. The sheer will that keeps me from wallowing and propels me forward is not a kind gift. Although sharing my condition with a broader audience will not resolve my symptoms or mitigate the potential path ahead, it may create a safer place for me to take a moment to breathe.

Lori Jones lives in Halifax.

 

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