“I have so many plans and it would be nice to be able to do it all – to enjoy my life all the time, instead of looking over my shoulder thinking ‘When is it going to get me?’”
Jodie, aged 24, who has MS
Jodie was just 17 when she began getting pains so intense she could barely move her eyes. Her optometrist could find nothing wrong, but to her shock he suggested she could have MS. Despite the terrifying diagnosis she could face, Jodie gathered her courage and went to her doctor. But he brushed off her concerns.
“He pretty much laughed at me. He was like, ‘You're only 17, as if that's what it's going to be.’ He sent me for a CT scan anyway, but it came back all clear, so I assumed the optometrist was wrong. Little did I know, at 17, that MS couldn't be diagnosed without an MRI,” says Jodie.
You may be shocked to hear that for six frustrating years, Jodie could get no answers. Again and again her eye pain came back, along with bouts of severe back pain and numbness – but every time, Jodie’s doctors told her there was nothing wrong. It just isn’t good enough that young people like Jodie have to fight to be taken seriously. The average age of MS diagnosis is just 30 years old, but there is still so little awareness of the disease and the fact that it can affect anyone, at any age.
This lack of understanding can leave people like Jodie feeling desperate and alone, doubting their own judgement as they battle with painful and frightening symptoms that doctors can’t explain. We urgently need to change this situation.
Over the following years Jodie got on with her life as best she could. She pursued a career as a chef, fell in love, and started a family with her fiancé, Robert. Like many young families they led a busy, active life, and Jodie pushed herself to the limits, working late evenings and early mornings so she could be home in the day to care for their son.
Then, one morning last August, Jodie woke up with double vision. When it didn’t pass after several days she saw yet another doctor who sent her to hospital in Toowoomba, a 2 hour drive away, for an MRI. The results were devastating.
“After I had the MRI we were driving home and the doctor called me and said, ‘You need to go back to Toowoomba because you've got MS’. I handed the phone to my mum and just bawled my eyes out. Robert was just as upset about my diagnosis as I was. That was probably the first time I'd seen him seriously cry,” said Jodie.
Back at the hospital, Jodie learned how serious her condition was.
“I knew this was a serious diagnosis, but there’s nothing like your neurologist saying you have 20-30 lesions on your brain and that someone your age should only have two or three. It was terrifying.”
Thanks to the generosity of MS Queensland supporters, MS Queensland could be there to support Jodie as she struggled to come to terms with the shattering news.
“I was devastated, mostly because I didn’t know anything about MS and it sounded so very scary. MS Queensland sent me information on everything I needed to know, and what treatments and services are available, which helped so much.”
Following an MS diagnosis, people like Jodie need accurate, up-to-date information, guidance and reassurance that their illness doesn’t mean their life is over.
It’s kind donations that enable us to provide crucial services like our NeuroAssist line, information packs and online resource centre that help people cope when they discover they have MS. Thanks to our supporters, people like Jodie can receive the personalised practical and emotional support they need to help them adjust to living with MS.
“MS Queensland arranged for me to see a physio, and visited me at home to help with things like paperwork – but the best bit has been the peace of mind of knowing they are just a phone call away. It’s so good to know they are always there if I have any questions or any problems, because they are so knowledgeable.”
Following her diagnosis Jodie received treatment for her symptoms, but it was six weeks before her eyesight returned to normal.
She and Robert were forced to make some very tough decisions about their lifestyle. Jodie gave up her stressful job as a chef, stepped up her exercise regime and made dramatic changes to her diet to improve her overall health and boost her immune system. One of the most distressing aspects of Jodie’s diagnosis was the impact on their plans for their family.
“The first thing they said to me when I got my diagnosis was, ‘Are you done having a family?’ I think because of how many lesions they found they thought it was going to be really, really serious. At that point we were actually trying to have another kid, but because of my treatments we’ve had to put that on hold. My son will probably be an only child now, but that's alright. We've got other plans now. I suppose that's life. You make other plans,” said Jodie.
The brutal reality is that when MS strikes it can change everything for people like Jodie and Robert, impacting everything from their daily routine to their dreams for the future. That’s why it’s so important that they have somewhere to turn to for support.
Only a few months after her diagnosis, Jodie had a relapse and temporarily lost sight in one eye. When her doctors discovered Jodie had developed two new lesions in such a short time, they fast-tracked her for a more intensive treatment in Brisbane. She spent five days in hospital with Robert by her side, while their parents looked after their little boy, Archie.
“The hardest part about all this is that, because we live so far away, I have to leave Archie behind when I have to go into hospital for treatment. It’s sad because I miss the hell out of him while I'm gone. But I have to focus on getting myself better so I can be the best mum to him.”
Thankfully since having her treatment in February, Jodie’s more severe symptoms have been under control and she hasn’t had to spend any more time in hospital.
But like many people who have MS, Jodie still lives with crushing fatigue, overwhelming anxiety and cognitive impairment that can make it very hard to function day to day.
“I have a shocking memory now. I work as a barista and I see a lot of regulars every day, and I sometimes just cannot for the life of me remember their 'usual'. Sometimes people can get frustrated with me – they just don’t realise that just because someone looks fine, it doesn't mean they actually are.”
This is something MS Queensland continues to hear all too often from people who have MS – that they often face prejudice and misunderstanding because the disease can be ‘invisible’, and many people believe that if they’re not in a wheelchair, they can’t really have MS.
A year on from her diagnosis, Jodie says her perspective on life has changed a lot.
“There’s the constant fear and worry as to what could happen and what impact it could have, so I am now doing the things I’ve always wanted to do – like when you’re driving along and say 'We should go there one day', instead of keeping on going we actually stop and go there, because one day I may not be able to.”
With the future so uncertain, Jodie is focusing on spending time with her family, taking good care of her health, and running an inspiring blog to share her experiences and creative recipes with others in the same situation. She is also doing all she can to raise funds and awareness, so that other people who have MS can also get the help and hope they need to live full and positive lives.
“A lot of us are so, so young and have our whole lives ahead of us. We have young kids who don’t understand, and we want to be able to stay active and be around for them. It may be hard for people to see the work that MS Queensland do, but being on the receiving end of an MS diagnosis you get to see all the amazing work, effort and support they give. I am forever grateful.”
Right now, there are more than 3,700 people across Queensland who are living with MS, many of them are people like Jodie who are just starting out in life. It’s awful that anyone should have to live in the constant shadow of such a cruel disease – and we can’t let them face it alone.