Something to Talk About
Seven important conversations on my MS journey and how they matter.
It was MS awareness week in the UK a couple of weeks ago and the theme was MS conversations. The country’s biggest MS charities encouraged people to have important discussions about MS and reflect on conversations that have mattered to them. I joined in the fun by thinking about my most significant MS conversations since diagnosis. I posted about one of them each day on my Instagram account (@ms_hobblicious).
Thank you UK MS awareness week, this was a really interesting exercise. I’ve spun all these little snapshots together here for my May blog post. What I hadn’t realised is that combining them reveals a timeline of how my MS conversations have evolved since this whole shit-show officially began in the autumn of 2018.
🏥 First, the doctor who was kind. Conversations at diagnosis*.
Receiving an MS diagnosis is devastating and life changing. Nothing can alter that. But how it’s communicated by your doctor can make a difference, both positively and negatively.
At my diagnosis appointment my neurologist was kind. He was honest and gave me time to try to take it in and ask questions. For a few brief moments, this took the edge off the blow he also delivered. Looking back years later, I remember his care and lightness of touch more than the trauma.
* newer subscribers - my two-part diagnosis story is here if you’d like to read it.
🙋🏻♂️ In the aftermath he spoke for me. Conversations on our behalf.
As much as I’m the boss of my own life with MS, I think it’s important to reflect on those who might advocate and have conversations on our behalf, at any point in our MS journey.
On the day I received my MS diagnosis, a handful of family and friends knew I had an appointment with the neurologist. I was able to text or call to let them know the outcome. But in the subsequent aftermath, there were many other people I wanted to tell, and I just couldn’t face it. Those conversations fell to my husband, Jase.
That must have been so tough, he’d been in the appointment with me, and was as punch-drunk as I was. Still processing it all himself. But he showed up, and spoke on my behalf, and I am grateful for that.
🍸 Still early days and we’re crying over cocktails. Conversations without words.
As much as I love words, there can be as much power without them.
Not long after my MS diagnosis, my lovely friend, Helen, who I’ve known since we were five or six, came to see me. We sipped cocktails in a bougie bar. And it’s not that we didn’t talk about my diagnosis, but as we sat, there were quiet tears that said “I know that this is a fucking big deal, and I’m here”.
☕️ A couple of years in and beyond, “like a chat with a friend over coffee”. Conversations in community.
In the early days, I didn’t want to hang out in the spaces where other people with MS shared their stories online. I wanted to hide away and pretend it wasn’t happening.
Over time, I began to realise that online communities were a lifeline of support from people who understood.
I discovered brilliant blogs. Tripping on Air and Wheelchair Kamikaze became my place of safety for open, relatable and funny conversations about MS. The honesty was a little scary at first, but I felt less alone.
I found a new community of friends with MS on Instagram to share thoughts on my new favourite topics such as using a mobility aid for the first time, tricky symptoms, the shitty things other people sometimes say to you… There was always someone who’d been there too.
Reading these blogs and posts felt like a chat with a friend (with MS!) over coffee.
🤬 Hazards along the way, “that’s just bloody rude”. Unwanted conversations.
When I started having visible mobility problems and using aids, I was surprised to sometimes find myself having conversations that I really didn’t want about, “what was wrong with me”.
At the hairdressers one day, another customer asked me this, and then started to tell me how terrible it was that I had MS. In front of my then 12 year old daughter.
Very upsetting, for both of us.
Thankfully, most people are not like this, but when it happens, it has the potential to wreck your day.
Over time, I’ve learned that no one has the right to know my personal information on demand. And I’ve become acutely attuned to when conversations seem to be travelling in this direction, and my boundaries are set.
🪷 Falling down a hole and getting out of it in 2023. Conversations in therapy.
Depression affects around half of all people with MS at some time*. I have been in that black hole.
I was lucky enough to be referred to an NHS online group therapy programme for people with MS, facilitated by a psychologist. In this group I had some of the most important conversations in my MS journey.
Being in a group with people having a similar experience, I was able to explore some of my deepest fears and challenges. Things that I’d never openly expressed before. It helped me recover.
Conversations in therapy might not be for everyone, but they were crucial for me.
*UK MS Society
📝 From scattered notes to publishing a blog in 2024. MS conversations through writing.
When my MS symptoms really hit home, I began writing down my thoughts and feelings. At the beginning of 2024, I started publishing this blog from those jumbled notes.
I shared my story with the idea it might help someone else, and I hope it’s doing that.
It turns out it’s doing so much more for me as well. It encourages me to be more open, and to work out how I really feel in the complex mess of dealing with this disease. I dare to think it’s helping people who know me have an understanding of what it can be like to live with it.
And through the writing, I have more connections and conversations. Shout out to the wonderful community writing about MS and other disabilities here on Substack:
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Let’s keep talking.
Thank you for reading
Jane 💛
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All of these are important points about living with MS and I can associate with most of them. Your voice and those of others who share our MS lives need to be heard by family, friends, employers and - perhaps most of all - our healthcare providers. Thanks for sharing yours and for the shout-out you've given to The MS Toolbox.
This is lovely, thank you. And thanks for the shout out! I’m remembering my own conversations, including the one where I had to tell my mother that I was not able to be the person to help her process my diagnosis. That was fun!