As a nurse, I was diagnosed with ‘very highly active RRMS’ at work in July 2018, so I didn’t really get the choice to keep it hush hush. I’ve always been an open book though, so I chose to be open and honest about my MS when people would ask. It is such a personal decision whether to tell people, and this way seemed right for me. The MS society has extensive advice available online about making this decision, which certainly helped during this time.
My job is physically, mentally and emotionally demanding, and involves being on my feet for over 12 hours a day. So, there really was nowhere to hide any symptoms even if I’d wanted to keep it quiet.
I am lucky to have a very supportive employer, and I can’t imagine what a huge stress diagnosis would be if you had the additional pressure of running a home and supporting family without the financial security of protected pay.
Looking to the future
Now, nearly 2 years on, I am wondering how to make a decision about moving forward with my career. I’ve tried to balance my itchiness for new experiences with a sense of self preservation, which is not something that comes easily to me.
Last year, I was given the opportunity to have a conversation about career decisions with an NHS CEO, Caroline Clarke, who wears another cape as an OMS trustee. I wanted to know what went into making a bold career decision with the added complexity of MS.
Her answer? A lot of deliberation, and ensuring a period of stability with regards to both symptoms and MRI results. A supportive and stable home life and employer also played a big role in this decision.
Taking this advice, I have been encouraged to continue to live my life to its fullest, and to follow my career aspirations, not without regard to MS, but with confidence in the OMS program and in myself.
MS is part of me, but doesn’t define me. If I experience progression to the point that I am not able to manage my role, I will deal with it when the time comes. I do not want to wait around for something that may not happen, and regret taking the back seat in my life.
OMS has given me stability to be able to focus on other aspects of my life, and I know that I would not be where I am now, mentally and physically, without the program.
At times when I have been unsure of my path, I have been able to see MS as an opportunity to encourage us to move into other ventures in areas we may not have explored previously. If your MS has meant that you’re facing an obstacle to career progression or even the job you are currently in, try to think laterally.
Firstly, engage your employer to adjust your role to something you can manage - in the UK, employers have a legal responsibility to create reasonable adjustments to keep you in employment. If a solution cannot be found, there are so many employment opportunities available. CAB are able to offer general advice surrounding disability discrimination in the workplace, while charities like the MS trust, and MS Society have great, specific advice and support regarding employment with MS.
A new path
I’ve always fancied an arty career myself, and was recently inspired by Kirsty Stevens, who found a way to make a living out of her MS, and Jolie Goodman, whose love of swimming and stunning artwork have helped her move forward with her condition. There are so many opportunities just waiting round the corner, that could be perfect for you.
No one knows how their MS will pan out, so the decision that faces us is to balance the potential regret of taking the safer, potentially less satisfying route, against the possibility of worsening progression associated with the higher stress levels that come with promotion and increased responsibility. Not an easy decision by any means, and one that is so personal to each individual. For me, moving out of the NHS would likely mean a less secure sickness policy, which is a huge factor in my decisions around employment. While I am doing everything I can to protect my health, I am aware of how quickly life, and health, can change, and how much I appreciated the financial security I have in my current organisation.
After some reflection, I am able to move forward with conviction, grateful to the staff and support network around me for the opportunity to get used to working with MS. I have given myself time to understand the condition, know my triggers and to contemplate my next step. With OMS and a period of stability behind me, I am ready for my next challenge, and by embracing my MS with this decision, it is not a limitation. What will your next step be?