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Living with Newly-Diagnosed MS

Tara shares her MS journey from pre-diagnosis to finally receiving a diagnosis, learning to live with her MS and how having a community has helped her.

Tara Jayne

My MS journey

In April of 2021, I was diagnosed with Multiple Sclerosis.

The diagnosis wasn’t a surprise to me, having had several small moments of overall body weirdness in the five years before. But they were so few and far between that I didn’t take them all that seriously, even if the words “Multiple Sclerosis” loomed like a shadow on every instance throughout the years of frequent migraines, occasional numbness, and clumsy cognitive dysfunction.

The month before I was formally diagnosed, I sat on the edge of my bed, and told my partner, “I think I have MS.”

I was reflecting back to 2016 when an optometrist told me that the Optic Neuritis (an inflammation of the optic nerve) I was having, was sometimes the first sign of MS. I would later read and verify that it was the first sign of MS in 15-20% of people, with that percentage being higher for women.

That particular instance of ON was followed by tiredness and what I now know as being brain fog.

“But how can you be tired?” my manager at the time asked, searching for an answer that I didn’t have. “You don’t even have kids.”

Without a formal diagnosis and a simple “what if?”, I chalked it up to a one-off infection - and everything else was just my own personal failure. I was just not good at my job. I was lazy, I needed to be healthier, I needed to try harder.

So I tried harder, and I got better again.

When 2021 came around, I had just found myself living with more happiness and fulfillment than I had in a long time. I'd been hired into a dream job and was finally finding my feet as a resident in a new country, only for my symptoms to return. The brain fog, the fatigue, and now - burning across my skin and intermittent numbness in my legs. I thought back to that first manager who didn’t understand me, and to other people in my life who didn’t understand me and I knew I had to do something.

Getting a diagnosis

I was fortunate to have a GP who took me seriously, scheduled an MRI and a Neurologist for me. I now know from having spoken to people about MS, that this is rare, and diagnosis can take a long time, particularly for women. I was able to be diagnosed after two sets of MRIs which flagged that there was evidence of demyelination on my brain and spinal cord.

I remember googling demyelination when I got home from my GP appointment. I studied it and learned that our nerve fibers are coated with a myelin sheath, and demyelination is an autoimmune response in which the protective sheath is attacked and destroyed, it is not reversible.

I like to compare the process of demyelination to an electrical cord that has been damaged and worn away, it still works - but you may find the odd spark, and strange things might start happening to the appliance.

Of course, we’re not appliances. We’re real people with dreams, aspirations, and responsibilities. We can’t just have our wires changed and replaced, we can only do what we can to prevent more damage from occurring while still continuing with our lives.

In the year since my diagnosis, I want to tell you that I’ve learned to accept this disease with a smile on my face - to live in the present and just get on with it. To an extent, I have, but I’m still angry, I’m still confused - and will most likely continue to be.

So what has been good?

Learning to live slowly. I’ve always described myself as a “go-getter” and I’ve always liked to be active, productive, and moving towards something. I piled a lot of my self-worth throughout my twenties into the amount that I can output, and into being the hardest worker in the room. Having a disease that saps away at my energy so much has also given me a gift in that I now allow myself the grace to just slow down.

Things can wait. I can take a nap and not feel guilty about it. I can do something meditatively, and not just to see a result. I can slow down and carve a space for forgiveness, moving purposefully with my health in mind.

I started painting a lot more and being content with my style. I’ve accepted that I have tremors in my hands and that they seize up after a while – but I’m quite happy with the occasional wonky line on a painting because accepting imperfection is powerful.

MS Community

I cannot quite put into words how grateful I am to have found so many people who are going through the same thing that I am, it makes me feel so heard and seen to relate to others - to find the humour and a safe space where we can laugh; a safer one to share our fears and frustration and be met with complete understanding and empathy.

Being in touch with the MS community has helped me to find my voice, and to discover a passion that I have for chronic illness and disability activism.

I feel supported by my fellow MS community, and I hope that they feel my support too. MS may be in many ways an invisible illness, but we don’t have to live invisibly with it. I know I’m never going to climb a mountain just for fun - that’s okay, I don’t think I ever wanted to anyway.

Managing a chronic illness in an ableist world is mountain enough, so I’ll continue to use my voice however I can to advocate, educate, and help to build a positive and thriving community for other amazing people like us.

Personal story
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Tony Hill

Thanks Tara for sharing your journey. Your bravery and resilience shines through. I was diagnosed 20 years ago and lived in denial for possibly 5 years (typical male!). I’m now part of an OMS circle and am able to talk to family and friends more openly. Exercise, diet, lack of stress and plenty of sunshine has pulled me through.
Loved your story.
Tony

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Rod Bolton (not verified)

Thankyou Tara, your journey certainly mirrors mine from uncertainty around diagnosis, and strange unexplained episodes to great support and being able to talk to others going through the same thing. I live in a country victoria and our monthly get together for a voffee and chat with other MS sufferers at various stages of their MS journey is a highlight in the month and a great sounding board and support network.

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Joke Veitch-Vaneechoutte (not verified)

Thank you for your story. I was diagnosed in September 2022, 5 days after my 60th birthday. I am still coming to terms with having to slow down. It makes me feel as if I am 80 and not 60. I am learning lots, doing my best to accept and indeed, I never really wanted to climb a mountain so I am grateful I am walking. I found OMS a month after diagnosis and have been following the eating program, still getting into meditation, and at the moment exercises has been somewhat difficult. I have a new physio and we will work together on getting me to stay mobile and with more confidence. thank you for writing your story, you are inspiring others to get on with it.
(I am trying to give a 'like' but cannot do it at the moment, maybe after I tick the submit button)

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