Emma Rogan was diagnosed with MS in 2007 and since then has worked tirelessly to raise awareness of the issues that affect people with MS. In 2012 she entered the Vodafone World of Difference competition and worked with MS Ireland on advocacy, policy and information. She now works for the European MS Platform, and is leading their Believe and Achieve campaign, creating paid internship opportunities for young people with MS through partnerships with businesses across Europe
What was the biggest thing you learned from winning the World of Difference competition?
It is hard to do justice to such a life-changing experience! I had the chance to work for the charity of my choice for one year, with salary, training and media opportunities. The value of routine and being back at work were things I hadn’t realised were so important to me. That year positively altered my life path. Winning World of Difference was a chance to make more of who I was, to re-awaken my self-belief, re-establish my career and be the best of myself. In turn, I want to show people that life does go on after diagnosis with a chronic illness.
What do you hope to achieve with Believe and Achieve?
We want to break the notion that, once diagnosed, people with MS don’t or can’t work. I want us to revolutionise the work environment so people with MS, and with other conditions, can continue to work or start in jobs where they stay on their career path, fulfill their ambitions and meet their financial needs.
What needs to change?
We need a unified approach from all government departments and organisations because it’s about helping people flourish in their workplaces and communities. We need local employment advisors who understand the fluctuating nature of MS symptoms and we need more information for businesses so they hold onto valuable employees. In the workplace, we need options to negotiate flexible hours and accessible workplaces. We also need quality work that matches people’s skills. MS doesn’t take away a person’s ability but there may be changes that have to happen to live a full, successful life. It is this ability that the Believe and Achieve programme wants to nurture.
What can people with MS do?
The MS Trust and other organisations provide useful, practical information about work and MS. We have to use it. Ask for support and, if you’re working, speak with your employer or social worker and make a point of preparing for change. The latest research suggests that people who disclose their diagnosis to their employers are more likely to stay in work. So if you want to remain in work and you have the capacity, give your employers the information they need. If you’re looking for work, you may need some help with your confidence to focus on the skills and experience that will get you hired. For employers, there are ways for you to ensure people are supported to stay in work. MS may be part of your existence but it is your ability to work that employers are interested in.
You blogged at the start of last year about writing a list of what you wanted to achieve in 2014 – how successful were you?
My writing output has been low so that will go back on my list! I’ve been using mindfulness meditation daily and making use of some brilliant apps such as Take Ten and Digipill for when I take my daily rest, Black Rainbow and chatting with folks on Twitter for motivation. For me, the point of any New Year’s resolution is to hope for what might be, peace of mind and celebrating life as it is.
What’s your top tip for sticking to those plans and resolutions?
Live in the present but do go back and check your list. Discipline and focus are vital, but for anything to work you have to enjoy yourself. I’ll be celebrating the wonder of life when I welcome a new family member in May; my partner Cathy is pregnant and we’re expecting our first child. Life is so much more than I ever hoped it would be. Dare to dream but allow yourself to let things go. You are in control of your thoughts so talk kindly to yourself. Join me on Twitter for a chat sometime. I’m @emmadragon
To find out more about Believe and Achieve and to see the latest vacancies visit emsp.org/projects/believe-and-achieve
To find out more about your work options if you have MS visit mstrust.org.uk/work
This article is part of the March 2015 issue of Open Door, the MS Trust’s quarterly newsletter.