Opening up about MS – my story

One day, I experienced some pins and needles in my right hand while I was doing the washing up. The next week, I had pins and needles down the right side of my body a few times. Once when I was crossing a street and I struggled to get across before the cars came.

Freezing up

A week later, I struggled to get into my flat as I couldn’t lift up my arm to put the key in the lock. I went to see my doctor. She gave me a full examination and agreed to refer me for further tests.

Over the next month the incidences increased from a few times a day to 5 or 6 times an hour at the worst point. My hand would clench up into a claw, one side of my face would droop, and my right side would freeze up. I froze up while walking down the street, on an escalator, when chopping vegetables with a sharp knife.  

Downplaying my symptoms

I stopped taking the tube as I was worried about falling. I stopped wearing heels and I wore trainers to work (I still do) in case something happened. I told a friend or two at work and my housemates that I was having spasms, but I didn’t share how scary it was.

I managed to hide most of the symptoms from my colleagues, staring at my computer whilst my hand and body froze. A few weeks later the frequency started to reduce to a few times a day and eventually two months after the first tingles it stopped.

Over the next year I had a series of diagnostic tests and in 2015 a lumbar puncture confirmed a diagnosis of MS. For the first few years, I kept my diagnosis quiet. I was still coming to terms with it and only my close family and a few friends knew.

Keeping secrets is tiring

I moved to a new job in 2013 and I needed time off for hospital tests and appointments. My manager was supportive, she didn’t pry and left the door open for me to share as much as I wanted. I had occasional bouts of pins and needles over the next couple of years and in 2017 I started a disease modifying treatment, Tecfidera (dimethyl fumarate).

As my body adjusted to the medication, I experienced nausea for several weeks and struggled to keep food down. At that point I decided to tell my manager about my diagnosis and why I was feeling so sick. It was tiring keeping it a secret and I realised I needed to use my energy for other things!

Knowing the support was there took the pressure off

She was incredibly supportive and asked what I needed to make things easier. Although I rarely needed time off work I knew the support was there which took the pressure off. In 2019, I moved to a new job. I was open at work from the beginning, telling my manager initially and then my team.

I have shared my fundraising efforts with colleagues, and I recently ran a session on ‘becoming a trustee’ sharing openly that I have MS. I am more confident and practiced talking about MS.

When and how do you tell your partner?

Telling my partner was a bit nerve-wracking, at what point in a new relationship do you drop this type of news? A few dates in, a few months in? When I was dating, I would sometimes hide the fact I had to take medicine with food, going to the toilet to take my pill or washing it down with wine at the table (not advised!).

But I didn’t want to hide this part of me with someone I had a real connection with. Once we got to know each other I told him and we talked through his questions. He is very supportive and reminds me to take my medicine and take a break when I’m pushing myself too hard.

Coming out with MS to my friends

In 2019, I decided to ‘come out’ to my wider friends and family during MS Awareness week. I work in diversity and inclusion and I know the power of role models and stories, but I hadn’t been ready to share mine until then.

I contacted close friends individually first to tell them (or to check I had told them – I forgot who knew and who didn’t!) so they wouldn’t see it on Facebook for the first time.

I used the opportunity to raise awareness and funds to support people with MS by sharing my fundraising challenge at the same time, running over 40 miles in the month leading up to World MS Day on 30 May. I received lots of kind and supportive messages and managed to raise a good chunk of money in the process. I was now ‘out’ with MS.

I joined the MS Society as a Trustee at the start of 2020, and decided to go even bigger for MS Awareness Week, running over 100 miles in May (just under 5k a day).

I didn’t want MS to change how people look at me

It’s taken me a while to accept and understand my diagnosis and be comfortable opening up. When I was newly diagnosed, I didn’t know how to explain what my diagnosis meant as I didn’t really know, and later I didn’t want it to change how people looked at me.

I don’t look visibly different but I do experience some invisible symptoms of MS: fatigue, odd tingly, twitchy sensations, and the occasional forgetfulness. I try to rest when I need it and I do Pilates, walking and running to keep fit.

After low energy and miserable weather the last few months I’ve started running again. And I’m doing the Royal Parks half marathon in October to raise money to stop MS.

MS is an unpredictable disease, and everyone’s story is different. I’ve found my voice and I want to use it to raise awareness of MS.

Ways to talk MS

Our online sessions and webinars are a great way to connect online. You can also join the conversation at Facebook, Instagram and Twitter. And our MS Helpline is here for you, offering emotional support and information.