Can you tell us about your MS diagnosis?
I remember university being the first time I realised there might be something wrong. I had pins and needles in my legs and feet on and off. I experienced a strange electric shock down my arms and legs when I put my head down. I later found out it is called Lhermittes syndrome and is a symptom of MS.
When I was diagnosed with MS in 2005, I was devastated, but I was adamant that I was going to live a normal life, the life I wanted to live.
I remember in the early days, I had a full-time job, was able to walk as far as I wanted and live a ‘normal’ life. Unless they looked closely, most people didn’t notice I had anything ‘wrong’ with me.
Over the next few months and years I experienced a number of relapses and some were pretty distressing. The ones that stand out most and caused most trauma were waking up one morning and not being able to see properly. The window frame was moving in all directions. I later found out it was called diplopia and was caused by my eye muscles not moving in sync anymore. Then there was the time I woke up one morning and realised I couldn’t walk anymore. Luckily with a lot of rest, healthy food, relaxation and steroids, I recovered from both relapses, but there was residual damage in my vision. The vision and walking problems together meant I had to start using a crutch. This progressed to two crutches and unfortunately, I now use a wheelchair most of the time. Although this makes some things easier, it presents a lot of challenges.
The most stressful thing about MS is we can no longer trust in the body’s ability to do normal things
In spite of these challenges, you set up your own very successful business. Can you tell us what drove you to do this?
As my mobility has worsened I carved my career in a slightly different direction. I had been working in a psychological consultancy in Manchester, doing a lot of team development work, workshops with senior teams, and assessment centres. All work that involved quite a bit of moving around.
In 2011, I set up MindingMe Psychologists Ltd. Over time I have focused more on one to one work as it allows me to do what I love without having to worry as much about getting around. I work with people who experience stress, anxiety, low mood, depression, relationship difficulties, work challenges and more. I love what I do and feel privileged that I can help so many people enjoy their lives.
The theme for World MS Day is ‘making connections’. In my work as a Psychologist and Coach, I see others with MS, who often report having less social connection with others.
Social connection is extremely important for our mental health. I guess deep down we all want to connect with others. We’re all longing to belong.
I believe my own experiences have ensured that I can give the best help possible to overcome their challenges and live their best life. I feel that I am exactly where I should be.
You spoke of the importance of family support, and in particular your husband Danny and your 3 kids.
MS is a condition that affects the whole family, and we all have to make adaptations every day because of my health.
I had MS for 8 years before becoming a Mum. I always knew I wanted to have children. Some people didn’t think it was advisable to have kids with MS, I understood their concern but when Danny and I were thinking of having a family my mobility and health was pretty good and we were sure it was what we wanted.
Several women with MS have asked me about having children and my advice has always been 100% yes. Having kids has given me the opportunity to do things I would never have done before and brought so much happiness. The children are bright lights that guide me through the darkness I often feel because of MS. I feel so lucky!
There have been challenges, however. From the outset, I was sad that I couldn’t lift up my daughter Aoife, and walk with her like other parents. The elation of having her helped come to terms with that, and I found ways around it.
Behind Aoife’s pram, I felt like I could hide my mobility problems. I was able to leave the crutches at home and lean on the pram instead. I felt like I looked like a ‘normal’ mum. As time went on, my mobility got worse and unfortunately when pregnant with my third child, I had to start using a wheelchair. While this was an incredibly tough thing to get used to, it really has helped open up my world. I was missing out on a lot of things with Danny and the kids because I couldn’t walk. Using a wheelchair poses additional challenges, but I believe this makes me better at my job. Disability and mobility issues have a significant impact on confidence, body image, and can lead to additional challenges with personal relationships. These are some of the things I work with clients on.
We moved back from Liverpool to Ireland when Aoife was 1. A big part of this decision was knowing that I would have family support nearby. It is challenging for anyone with children who does not have family support, but throw MS into the mix and it can feel overwhelming.
How can companies help those with MS, and their families?
There is a role for employers to consider how they are supporting staff with MS, or employees who have family members with MS.
Although I had had a very positive experience with my previous employer, that is not the case for a lot of people. I hated the thought of having to ask for time off for medical appointments, and having to ask for days off if I experienced any physical symptoms due to the MS.
Support should be designed and embedded in the culture of organisations, so that staff are not frightened to be honest about their needs. An ideal situation to aim for is one where we don’t even have to ask for adjustments, one where facilities and processes are designed with everyone in mind. Communicate with employees affected by MS. Offer the chance to discuss their needs. A compassionate, supportive, inclusive and not judgemental approach is imperative.
To help the world reach that goal, we have to keep talking about our needs, and educating others on the challenges faced because of the condition.
Employers can enhance the experiences of people with disabilities at work. Flying the flag of disability awareness has to be more than lip service.
How has your view of MS changed since your initial diagnosis?
People often comment that I must have good and bad days. That was the case in the beginning, but fast-forward 18 years, the truth is that every day is a bad day now in terms of my mobility. I feel emotional writing that because those words do not fit with my spirit of positivity and optimism. Putting on my realistic hat for the purpose of writing this, that is the reality.
Although there have been many challenges, MS has really helped me to appreciate things so much more and given me a more positive outlook on life. Being forced to slow down means you see things you might not usually see. Everybody has their own challenges to deal with in life, this is just mine, and I think I’m doing a pretty good job of it, thanks to a positive attitude and supportive family’
credits: Naomi Palmer & Sarah Connell