"I didn't want to worry you if I didn't need to. But I had an MRI on my spine..."

By RENEE COFFEY

After a strange, distant ring tone, my boss Andrew answered his mobile on holidays somewhere abroad.

“Sorry I haven’t said anything sooner,” I found myself saying from the lounge at Sydney airport.

“I didn’t want to worry you if I didn’t need to. But I had an MRI on my spine and it showed two lesions, which have been causing some problems. The neurologist thinks it’s likely to be MS.”

A pause and then a big lump formed in my throat, the first sign of tears that day, “I … I don’t have to stop working do I?”

I will always remember Andrew’s reaction as it somehow set the tone for the weeks and months that unfolded. After the expected enquiries about whether I was feeling ok, he said,

“Do you think you can keep working?”

I hurried to provide the appropriate assurances.

“Then until you tell me otherwise, we’ll keep on going like usual”.

MS is a serious, neurodegenerative disease that can affect anyone, but it often strikes young women in their late 20s or early 30s at a critical time in their lives and in their career trajectory.  The cause of MS is unknown.

For me, in 2011 I had just moved down to Sydney from Brisbane to take up a new role with the Australian Indigenous Education Foundation – a significant, exciting promotion.  One afternoon in the office, I felt something very lightly touching me on my ribs.  At first I thought it was a loose thread on my shirt (I even went into the bathroom, took my shirt off and inspected it for a thread!)  Within days that sensation turned to an insatiable itching, then by the end of the week it was an intense constricting feeling around the right side of my torso.  Pretty soon I had lost strength and some sensation in my right leg – meaning I had to concentrate to walk and was tripping. During this time a very good GP had referred me to a Sydney neurologist who specialises in MS.

It was in his office my MRI scans were held up to the backlight.  Bev, his secretary had already clued me into the fact the news wasn’t going to be good when she read the MRI report in front of me, making a few soft tisk noises followed by a sigh and a head shake as she put the report back into its envelope.

But still there was hope, right?  Bev hadn’t gone to med school.  And yet when I got to read it, the report was clear – two sizeable lesions were on my spine.  You see that’s how MS works.  These lesions are damaged myelin – the fat that surrounds our brain, spinal cord and nerves.  When damaged, signals can’t get through properly – hence the itching, constriction and gammy leg.  The condition is usually relapsing and remitting – meaning symptoms will often get better. That is, until the next episode.

Some weeks after my diagnosis, I was interviewing a young woman for a position. We had an informal lunch and she was very impressive – exactly what we were looking for.  At the end, I decided to level with her, “It would be great to have someone like you on the team, as my health is a little uncertain at the moment, and I would sleep easier knowing there was someone else there to step up if needed.  You see, I’ve just been diagnosed with probable MS”.

She started to laugh.  Not like a nervous giggle – it was a slap-your-hand-on-the-table blurt of a laugh. Awkward moment.  “I have MS too!” she said incredulously.

She then went on to explain that despite having numerous episodes each year, she had chosen not to disclose her condition to employers.  This was working fine for her – as she had not yet exhausted her leave balances in any one year.  She explained she was working in law firms and feared such a disclosure would be career limiting.  In contrast, revealing this added dimension made us want her on our team even more, but it wasn’t to be.  The law was calling her.

In materials I’ve read since, I’ve seen advice suggesting people wait and think carefully before disclosing their MS, especially to employers as it may affect employment prospects. There are over 23,000 people in Australia with MS, with an additional 1000 diagnosed each year.  Many of the symptoms are “silent” meaning there are probably plenty of people living with this condition in the shadows for years, “coming out” only when disability is visibly evident and there is no other choice.  I met one young woman who hadn’t even disclosed her long-term diagnosis to her parents, family or any friends.

This was counter-intuitive to me.  At a time when I needed support the most, the idea of keeping such a painful secret seemed more unbearable than the diagnosis itself.

Recent research funded through MS Research Australia shows that Andrew’s response as an employer is not atypical and that disclosing a diagnosis of MS in the workplace is associated with improved retention of employment.  Following my immediate family, my boss was one of the first people I told.

I’m not going to lie – the following 12 weeks were hard.  My husband and I were adjusting to a new city; I was managing a large team at work, and battling ever-changing symptoms including knock-you-off-your-feet fatigue each afternoon and a leg that just wouldn’t do what it was told.  But I was able to shorten my days, limit travel and be open about how I was fairing.  I got through those weeks with my family’s, friends’, colleagues’ and employer’s support and by only concentrating on the challenges of each day and trying not to think about what might eventuate in the future.

It’s been almost three years since my diagnosis, and fortunately, no further episodes to report.  We’re thankfully still just going on as usual.

Renee (@rey_coffey) is a 2014 Kiss Goodbye to MS Ambassador, and Projects Director at the Australian Indigenous Education Foundation.  She is a wife, and mother to one-year-old Alexander.  Following her diagnosis of probable MS in 2011, Renee converted to a plant-based + seafood diet, with regular sunshine, omega 3s and exercise and has to date been relapse free.    Renee is excited that Australian researchers are leading the charge to find a cure for MS.  Please donate to MS Research Australia for Kiss Goodbye to MS this May.

Please share this post to help raise awareness for Kiss Goodbye to MS.