During Multiple Sclerosis (MS) Awareness Week, Evenbreak’s Head of Marketing, Jemma Redden, shares her story, highlighting the challenges faced when you have an invisible condition and providing top tips to help candidates and employers.
“But you look fine”
This is something you hear a lot when you tell people you have MS.
I was 23 when I was first diagnosed. That was 15 years ago.
One in 500 people in the UK have multiple sclerosis but what is it?
What is Multiple Sclerosis (MS)?
Multiple Sclerosis (MS) is a neurological condition that affects the brain and spinal cord (the central nervous system). In MS, the body’s immune system turns against itself and, instead of fighting off infection, it starts attacking the myelin coating surrounding the nerve fibres in the brain and spinal cord.
Common symptoms include; fatigue, numbness, visual problems, dizziness, loss of strength and pain, difficulties with speech, bladder and memory problems.
But, MS is unique; no two people are affected in the same way. The symptoms vary depending on where in the brain and spinal cord the myelin damage has occurred.
Many of these symptoms affect the individual on the inside and unlike a red and runny nose with a cold you don’t always have a visible symptom, which is why the reaction is often ‘But you look so good’. This might be true but on the inside we don’t feel good and sometimes that’s the biggest battle. It’s hard to explain something that’s happening on the inside to someone who has never experienced what you’re feeling.
My MS journey
I was completing my post graduate diploma in Journalism, just started my first job as a news reporter and moving into my first home. It was quite a busy time and it wasn’t until later that I understood that stress is a major trigger for MS.
I thought my symptoms were stress related. Dizziness, balance issues, sensory pain. I thought I’d had a stroke at one point when I collapsed due to weakness in my limbs. I thought, “it’s ok, it will pass.” I tried to brush it off and get on, which is something I often do as a headstrong, independent woman!
But after 6 months, I finally got a preliminary diagnosis of MS.
My heart, and what felt like my world, just sank. I crawled into a self pity well contemplating my future.
Through the MS nurses, I met the MS Society and received support. My friends and family were my biggest strength.
My employer was supportive too.
I had wanted a career in journalism since the age of 10 so I was so grateful to have an editor and team of reporters who were supportive.
I’ve since moved jobs and met some good and some very bad employers who weren’t quite sure how to handle an employee with an invisible condition.
Not everyone’s MS journey is the same. There are different types of MS from relapse and remitting (which is where I am at), to secondary and primary progressive. The latter stages are less invisible with many people having visible mobility or speech problems.
The following top tips are aimed at people with invisible conditions and employers who want to make the workplace inclusive. This is based on my experience and what I would have wanted to hear at the beginning.
Be open
If you have an invisible condition, be open to sharing your diagnosis and potential symptoms and triggers with your line manager. It’s true what they say, out of sight, out of mind.
Employers should be open to listening and be empathetic when a candidate or employee shares their story and what they need in order to thrive in the workplace.
When I was first diagnosed I felt I had to hide it. It took time to realise that I was making things harder for myself by not talking.
Be kind
Be kind to yourself, take a rest when you need it. Another thing I didn’t listen to in the early days. Head strong, convinced it would pass and not wanting to look weak.
Stress is a trigger for an MS relapse.
I still have an internal battle with this one at times.
Employers should consider the workload and pressure on employees. We can absolutely work, we can be in senior positions and we can have responsibilities. It’s about supporting employees with the right tools, resources and space to perform at their best.
Trust
Trust your instinct. If you’re not feeling well then trust what your body is telling you and don’t ignore it.
Trust your employees when they tell you they are not feeling well.
I found it incredibly challenging to speak to senior leaders in my early career when I didn’t feel well (but looked ‘fine’).
- Be open
- Be kind
- Trust
Jemma’s fundraising challenge: #Invisible40
As I got closer to the big 3-0 I was feeling so grateful that my legs still worked and so I set myself a challenge to walk 1,000 miles to raise awareness of the invisible condition and fundraise for the MS Society.
I raised £2,500 for my Invisible30 challenge and it’s my proudest personal achievement so far.
During the last winter lockdown, I started to feel isolated, depressed and pondering on what my legacy might be in life. I can’t have children but not because of MS, that’s another health issue, so children won’t be my legacy. I looked back on my Invisible30 challenge and smiled.
Since that challenge, 5 years had passed and my MS has relapsed every two years but was manageable on medication until 2018 when I had double vision and a lazy eye. I lost all my independence and that self pity well returned. After strong medication my eyesight returned.
So looking back 5 years, I was proud of my Invisible30 challenge and looking forward I could see the big 4-0. I wanted to push myself out of the darkness of the lockdown depression and do something to make a difference to others. In 2020, I launched Invisible40, my challenge to walk 5,000 miles in 5 years.
I’ve completed 4,618.37 miles so far and I am on track to reach 5,000 by September 2025.
Last year I also became more involved with the MS Society as a National England Council Member too.
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