What we’ve learnt about having MS conversations
MS conversations are happening all the time, in all sorts of situations. Gemma, Yinka and Craig share what they’ve learnt about talking about MS.
Being met with kindness helped Gemma open up
I've become very comfortable about having open and honest conversations about my MS with my manager at work. They allow me to talk freely about my MS and anything on my mind.
In recent months, I've been struggling with mood changes and depression that come from having MS. And it all started getting to me. I felt like I had no one to talk to about this.
However, my manager encourages honest conversation, so I went to her and told her. She approached this in a very non-judgemental way and handled it with kindness and empathy.
What my experiences have taught me
- Don’t feel like you need to keep things bottled up and go through things alone in the workplace.
- I only tell who really needs to know what’s happening. For me that’s my manager and other people I can trust.
- Advocate for yourself where you can. At my workplace, there’s a ‘Living with Disabilities’ Staff Forum. They’ve given me full reign on world MS day to educate and inform the whole of my NHS Trust about MS.
Talking helped Yinka accept her MS
When I was diagnosed with MS in 2008, I had never heard of the condition. It was a sharp learning curve. I couldn’t bring myself to say: I have MS.
It felt like the whole world was collapsing on me. I kept the news within my immediate family and few friends. I had to tell my employers because I needed some adjustments made, but that was it. I just dropped out of circulation and stopped socialising. I felt so alone and carried the weight with a lot of shame.
In 2018, I had a major relapse that changed everything for me. I started treatment, and I started accepting my diagnosis.
I realised it was important I adapt to my new normal and tried to live life as best as I can.
I started talking to my friends about it. They said: why didn’t you tell us? But it was just the phase I was in: first denial. Then grief, then anger.
Talking about it actually got me to a place of acceptance. It helped me to view things from a different perspective. I stopped feeling sorry for myself and I knew that life just had to keep going on.
Things that have helped me talk about MS
- It's a journey. You may have to give it time and work out what you need before you start talking.
- It's OK to say no. If you plan to meet up with friends, and then you feel your body can’t handle it, it’s OK to tell them you can’t make it anymore. The people that will understand will understand. Never feel guilty about it. You don’t need to apologise to anyone.
- Find a support group of fellow MSers. Then you can run things past people who relate to what you’re going through. Someone might have experienced the same thing, and can help you put things in perspective. I go to a Pilates group with other people with MS. I look forward to it every week, it puts a smile on my face.
- You have to be almost selfish about taking care of yourself. For me, this is like a conversation starter when I have to explain to someone: look, I cannot do this. Then I'll tell you it's because I have MS and I’m looking after myself.
Craig’s learnt how to ask questions of healthcare professionals
When I was diagnosed in 2015 my then neurologist (since retired) said to me: "you have primary progressive MS so there’s nothing we can do for you, goodbye."
There weren’t any disease modifying therapies for primary progressive MS then. Now there is Ocrevus (ocrelizumab) for some people. But even so – lifestyle changes like diet and exercise plus symptom treatments can help.
That was nearly 10 years ago. Since then I’ve worked out what helps me. I’ve cut down on processed foods and instead of the gym I still exercise from home, with Dom Thorpe’s Warrior programmes. Yes I use a wheelchair but so what, it helps me. That is the main thing, helping me.
The words from the neurologist hit hard. The MS nurses helped me, as did reading information on the MS Society’s website.
And people sharing their experiences in various groups, which led me to volunteering for the MS Society.
I talk both online and in person (to anyone who will listen), providing answers where I can. I avoid medical jargon and talk in plain terms. If I can help one person I feel great.
Here’s some things I’ve learnt about talking to health care professionals.
- Before I talk to a healthcare professional I always note my issue down as I may forget things.
- Remember they are people too, not a diagnostic machine. We are all different.
- There are no stupid questions. Don’t be afraid to ask them to ‘dumb down’ the answer so you understand it.
MS Awareness Week
Talking about MS can be difficult, we can help you get started. Visit our MS Awareness Week hub, where we're sharing stories and resources to help you start those all-important conversations.
