“I get angry when people say that I’m lazy. I’m not lazy! I'm mentally able, but my body is just exhausted. It won’t move. Lifting my limbs sometimes feels like lifting a 100kg weight.”
Ursula, aged 44, who has MS
As a young woman in her twenties, Ursula had everything to look forward to. Just married, with a baby son and a career she loved, the future looked bright and exciting. Then she started experiencing strange and scary symptoms, including numbness and unusual skin sensations. She had a job at a GP practice, but none of her colleagues could explain what was happening.
“I went to a bone specialist, and after that about five other specialists, but none of them knew what it was. By then I was feeling very ill, and I looked really sick, and my walking wasn't right.”
It’s hard to believe it was so tough for Ursula to get answers, but her experience is all too common. It can take years to get an MS diagnosis, and people with MS often have to fight just to have their symptoms taken seriously. Without a diagnosis people can’t access the treatment and help they so urgently need. It’s absolutely vital that we continue to work with the medical community to provide resources and information about MS, so that people like Ursula won’t have to cope alone with their terrifying symptoms. Finally, Ursula saw a neurologist who recognised her symptoms immediately, and gave her the shattering news that she had MS. She was admitted to hospital, and forced to make an agonising choice.
“They said to me, ‘If you want to have another baby, you have to have it now, before you start taking these drugs’. And I thought, ‘I'd rather have one beautiful boy and give him everything I can. If I delay treatment there is a risk my MS is going to get worse and then I would have to care for two small children and manage my disability’.”
Having given up thoughts of expanding her family, Ursula began a gruelling regime of treatment, with daily self-injections to keep her symptoms in check. With the help of her husband, Paul, and her family and friends, she threw herself into raising her son, Cooper.
“Bringing up a young boy was very difficult, but I had a wonderful support network. He is about to turn 18 now and he’s never known me without MS. He's come on the journey with me and seen what happens. It’s made him very compassionate.”
Sadly, as well as the chance of having more children, MS cost Ursula her career.
“I'm a young, vibrant, energetic lady, but I have struggled to find employment, even after I furthered my studies. It's hard to try and prove myself. I’ve been very upfront about having MS and I feel I've been discriminated against for many years as a result.”
It’s hard to believe that someone with so much to offer has been rejected by almost 40 employers, despite holding qualifications in property management, make-up artistry, interior decorating and, importantly, community services.
“I know a lot of young people who are very intelligent and very successful in their jobs, but they have this disease and it affects their lives. They are quite capable of working and they are an asset to the company, but employers don't see that. People are still very naive when it comes to MS.”
Ursula is right. It’s not fair that people face prejudice and discrimination because so few people understand this disease – and it’s up to us to do something about it. Employment is a key contributor to quality of life for people with chronic illness. With the average age of diagnosis at 30, people living with MS have acquired significant skills and experience during their career that they want to continue to build upon. However, between 50 – 80% of people are unemployed within 10 years of diagnosis. It’s kind gifts that help us to address this shocking statistic.
MS Queensland recently hosted an Employment Retention roundtable with the Australian Human Rights Commission, Disability Discrimination Commissioner and representatives from the National Disability Insurance Agency (NDIA) and State and Federal Governments, allowing people living with MS and their carers to highlight this critical issue and discuss ways to drive Government reform. Unable to find work, Ursula devoted her time to helping others instead, volunteering for a number of charities and doing community service work. She also became passionate about raising funds to help others with MS, taking part in challenging fundraising trips to India and Cambodia.
“I used to donate money to MS and I didn't even know what it was! But now it’s about helping the many friends I’ve met since MS came into my life. We urgently need support and accommodation for people with disability, and funding for research, because we need to find a cure.”
Despite all that MS has cost her, Ursula has an incredibly positive attitude to life.
“When I did the 480km fundraising cycling challenge in Cambodia, I was the only one there with MS. And that disappoints me. People just don't believe they can do it – but they can. You can do anything! I don't look at MS in a bad way. The things that I've seen in my life and the people I've met, I'm very fortunate. MS has brought much love into my life – and it’s not going to break me, it’s going to MAKE me.”
But none of this has been easy. For the past 18 years Ursula has had to fight a constant battle with debilitating symptoms.
“The symptoms vary daily, from weakness in my limbs, to fatigue, or things like my body overheating. And there are the unseen symptoms, the cognitive stuff that goes on inside, that I wish people understood. Sometimes you get into a difficult situation – like one day when I had a hot bath. I was home alone and I couldn't get out. I had to wait until the boys came home and could help pull me out. That’s the stuff you have to deal with every day. On the positive side, my life is never boring!
I'm still mobile at the moment. Balance is hard though, and I've fallen over twice and broken my nose. The day I can't drive any more, that will be really upsetting – but you’ve just got to keep going. On the positive side, you don’t need a licence to ride a tricycle!”
Thankfully, Ursula’s family and friends have been there to support her in every step of her fight against MS. And thanks to the generosity of our supporters, she has also been able to rely on MS Queensland for crucial emotional and practical help.
“The MS Queensland physio was really good. It helped me to heal after a bad attack. And the psychologist helped me through a very bad state. That was a very important part of this big journey I've been on.”
We're happy to say that Ursula is receiving a new form of treatment which appears to have slowed the progress of her MS. With her son now grown up and her symptoms under better control, Ursula is pouring her energy into running a support and friendship group for people living with MS.
“Over the 18 years I’ve lived with this unpredictable disease I’ve come to believe strongly that we need to talk to others about our daily experiences and feelings. MS can mess with your head in so many ways, my confidence has taken a beating since my own diagnosis. I also think it's really important to help others by telling them about the things I’ve learned to do to make my life simpler.”
Groups like this can make a life-changing difference to people who are living with MS, and at MS Queensland we do all we can to encourage and support passionate people like Ursula who are determined to make life better for others. Thanks to the generosity of our supporters, we can help community-based MS groups to raise awareness, stay in touch and come together in an annual gathering where they can share information and ideas and build even stronger support networks.
Christmas can be a difficult time for many people, especially for those without a strong support network. This is yet another reason why MS support groups have a vital role to play.
“I find support groups help fight the isolation, giving us the chance to be social with other likeminded people. We have great conversations and we all laugh and say ‘Oh yeah, I do that too’. And I think ‘Okay, I’m not the only one, I’m not on my own’.”
There are scores of groups like Ursula’s, as well as thousands of people and their families right across Queensland who rely on us for support.
Please DONATE NOW to help us provide up-to-date information and essential practical and emotional support to Queenslanders who are living with MS.