real life

'Christina Applegate and I both have MS. But there's a huge difference in our journeys.'

Listen to this story being read by Shannen Findlay, here.

As I sit here and reflect on my journey thus far living with Multiple Sclerosis (MS), it sure has been a challenging one. 

In March 2011, I sat across from a neurologist who for the previous six months had been saying it was my migraines that had caused white spots to show up on my brain in three previous MRIs.

I come from a strong genetic background of others being diagnosed with MS including my mother and her cousins. I kept asking if it was MS. And I was told no. Then that one fateful day, he mouthed the words I'd been dreading to hear, "You have MS". (MS is not hereditary but has a genetic predisposition if all the environmental factors are in place).

Watch: Selma Blair speaks out about her MS for the first time. Post continues after video.

Video via ABC News.

I don’t remember very much else he said, as fear went straight through my mind as to what my life would now become. I had recently become engaged and thought I was in my dream relationship, dream job, and living my dream life. My world crashed around me. Everything I knew was shattered, that naïve carefree thinking of 'I’m going to be well and live forever' was gone in the blink of an eye.


My mother Marian passed away at 49 from complications of MS. Suddenly, I thought that I only had nine years left to live. I had to stop working, becoming a burden on society with my disabilities. This caused depression and thoughts that my life was over. Thinking that my journey was going to be the same as my mum's. I struggled for the next couple of years to get my head around the diagnosis, going through all the stages of grief and asking, 'Why me?'

Then, I realised my MS journey was mine alone, similar to others, but different as well. At the time, I wondered why famous people don't get diseases like this. I couldn’t even begin to imagine what it would be like to live in the public eye after having been diagnosed with an incurable progressive disease.

When I was diagnosed at the age of 40, there were no online support groups in Australia. I felt alone and very scared. In 2011, I started the first Facebook support group called 'Supporting each other with MS in Australia' where people like me could vent, cry, scream and be in a safe place with other people who are going through the same disease. 

It must be very hard for celebrities who wouldn't be able to join such groups for fear of the media publishing their concerns. I was raised in an era where it was impolite to talk about your health problems to others, or to ask questions. Thank goodness times are changed.

At the time of my diagnosis, a few celebrities had shared their stories about MS, such as Betty Cuthbert, Chrissy Amphlett, and Richard Prior to name a few. I don’t recall them going into much detail about how MS affected them, keeping it mostly private.


However, in recent years, more celebrities are coming forward with their diagnosis of chronic diseases and raising awareness to the general population on what reality is like living with such adversities. Michael J Fox is talking on major platforms about living with Parkinson's. And Selma Blair wrote about her experiences with Multiple Sclerosis in her memoir, Mean Baby: A Memoir of Growing Up. Selma’s documentary, Introducing Selma, reveals Blair’s intimate and raw journey with Multiple Sclerosis. It's extremely confronting and terrifying for someone watching who is newly diagnosed, yet educational for the general population.

Recently, Christina Applegate has come forward and shared her diagnosis of also having MS. Both women are at different stages in their MS journeys and in the grief of coping with the loss of a healthy body with an incurable progressive disease.

Celebrities without a doubt raise awareness of the diseases that they have disclosed in the public eye, which is very brave of them to do so. It shows that MS does not discriminate, and being famous or having money does not protect you from getting sick. It can’t be easy for them having their every move, including their bad days, shown in the media. But for many of those who do not have a media platform, it is a worry that their own MS journey will be compared to those in the public eye with MS.


Every single one of us who has MS has a different journey. We have the same disease, but very different outcomes. No two people will have the same journey with what they experience with their MS. It is a disease that impacts the brain and spinal cord, which make up the central nervous system and controls everything that we do. The immune system is triggered to attack the central nervous system. This damages the Myelin sheath, a protective layer insulating the nerves and stopping the signals to and from the brain. Symptoms are unpredictable and can include pins and needles, mood changes, nerve pain, cognitive problems, fatigue, numbness, mobility issues, and even blindness. These symptoms can be temporary or long-lasting.

It is great that celebrities like Selma and Christina are raising awareness, but the wider population needs to realise that MS doesn't follow the same path in everyone.

I just hope they're not held up as models of "This is what MS looks like", because that is very dangerous for the rest of us. It's very dangerous to compare, as often people with MS don’t look like people with disabilities. Having to explain and defend your diagnosis is draining and uncalled for. 

When people see celebrities that have MS talking about their mobility issues or something else that’s affecting their body, they are likely to compare it to someone that they know who has MS, who is likely to have completely different symptoms from the celebrity speaking about their experience. They are then having to defend what’s going on with their own body that people can’t see, to reiterate that they to have the same disease. 


Selma, Christina, and I are at very different stages in our own MS journeys. Christina recently said, "Acceptance? No. I’m never going to accept this. I’m pissed." That’s one major difference between my journey and hers. I have accepted that I have MS, I don’t like that I have MS, and I’ll never like that I have an incurable progressive disease, but accepting the disease does make it easier to live with it. Getting through that stage of grief of anger will make it easier to live with this. It’s been a long bumpy road to get to this point. 

I am grateful that more people are bringing awareness into the media of what it’s like to live with an incurable progressive disease, and that it can affect anyone. One in five people know someone personally who has MS. 

Nearly 12 years on from being diagnosed, I have lots of good days and some really bad ones but I live a very happy life, reinventing myself by becoming an award-winning international coach/speaker, author and artist and what I’m still capable of doing despite the adversities I face daily. I have gained resilience and now help other people facing similar adversities by teaching them how to have a 'Resilience Mindset'. Though it would be nice to live in a world where there was a cure for MS and all diseases.

Feature Image: Supplied.

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