What do you know about Multiple Sclerosis (MS)? You may know that it’s a disease and that there’s a fundraiser called the MS Readathon. You may know there’s a high correlation between the disease and being in a wheelchair. Then, 26-year-old Sarah Flanagan knew as much as you did, until she was diagnosed with the early stages of MS.
Now she’s aware that it's a condition of the central nervous system and that more than 23,000 Australians are currently diagnosed with MS - most are young women. Around 75 per cent of all cases of MS are female and 95 per cent of people diagnosed in Australia speak English or a European language at home.
Now, at age 28, Sarah shares her mental struggle with a disease we still know little about.
I was in New York on holiday when I first noticed symptoms. I was rushing somewhere and I got these pins and needles feeling in my feet: like when you’ve been sitting on your feet for too long, except the feeling didn’t go away. The feeling moved up my legs and then into my hands. I ignored it and tried to enjoy my holiday.
But one night I had a stressful sleep and tingles and tightness spread to my torso. I was going to the bathroom every 15 minutes and it was an unbelievably restless feeling. The next day I paid $250 to see a doctor in San Francisco, but I became none the wiser.
My intuition was telling me that my life was about to drastically change. A week later, I was diagnosed with demyelination, early onset of MS.
When I got back, my mum urged me to get it sorted, so off I went to a neurosurgeon. All the standard neuro tests were normal until I remembered an important symptom, that I got this electric shock down my spine when I put my chin to my chest. When I told him this, his whole face changed.
He said I had earned myself an MRI.
During the MRI, lying on a hot box with a cage over my head, I noticed the radiographers pointing at something noticeable on the scans of my brain and spine. After, I sat in my car and burst into tears.
My intuition was telling me that my life was about to drastically change. A week later, I was diagnosed with demyelination, early onset of MS. MS is a disease that affects the central nervous system and has no current cure. [I've been told that] four Australians are diagnosed with it every working day. And on this day, I was one of those four.
Since my diagnosis, I’ve struggled to grapple with the unknown. No doctor can tell me what my future holds. I've only been told “If you smoke, stop and if you don’t exercise, start.” That’s it. Most people with MS are women aged between 20 – 40 years and more Anglo-Caucasian women are affected. But again, they don’t know why this is.
It’s not a curable condition or reversal but it is treatable. The medication I am on now acts as a lock and key for the immune cells jumping into the nervous system and it’s currently working. But the battle is more mental than physical. It’s a condition that requires you to change your attitude.
I’ve struggled to grapple with the unknown. No doctor can tell me what my future holds. I've only been told “If you smoke, stop and if you don’t exercise, start.” That’s it.
I used to go out and party every weekend before I was diagnosed. Now, I battle with the balance of YOLO and self-preservation. I'm still young but I only have one body and I can’t take advantage of that. I have to ask myself, if I go out on a Saturday night and only have four hours of sleep, will that be the difference between me being in a wheelchair in 20 years time or not?
People's reaction to my diagnosis has been varied and to be honest, quite hard to deal with. I want people to not make assumptions about what living with MS is like. It's a condition that is so unique to the individual and must be approached that way. You knowing that Sally down the street has MS, is of no comfort to me.
MS is a condition you need to change your attitude for. I’ve had to come to terms that I need to find a balance in my life. I’ve actually become more optimistic, because I have to be.
Every story is different and this is just my one.
31 May is WORLD MS DAY. For more information, click here. #lifewithMS
Sarah Flanagan is participating in the MS Walk Fun Run on 4 June 2017 to raise fund to support those living with multiple sclerosis. You can donate here.
Love the story? Follow the author here: Twitter @shannylm