My MS conversations

I was diagnosed with MS in late 2019. I spent a long while in denial about my diagnosis, only telling very close friends. My husband knew, but we kept it from my close family members. My Dad has had MS for 40 years, and I didn’t want him to feel guilty about my diagnosis. More than that, I felt that “my MS” belonged to me, and I needed to process it. I didn’t fully understand this at the time – I just knew that I didn’t want to tell them. There was a lot to process and mainly, I tried to ignore it  It was easier to just get on with it myself, in my own little world.

However, in May 2023, I had a breakdown. Even though I still managed to get on with everyday tasks –  working full time as a lecturer, looking after my children, and keeping up with day-to-day life –  inside, I was crumbling. I am a “get on with it” type of girl, someone who never says she can’t do something. As a lecturer, I spend my days caring for and managing teenagers, offering advice on mental health and wellbeing, and helping them find empowerment in themselves.  Eventually, I realised that I needed to take my own advice and start asking for help.  

How I asked for help

I self-referred for Mental Health support, requested another physiotherapist and investigated private therapy. Within a week, I had initial meetings with all three practitioners. Being verbally honest about my physical symptoms and mental health brought everything flooding to the surface. It overflowed, and I started having panic attacks at work; my breathing was laboured, and even small things felt overwhelming.  

I remember my line manager asking one day if she could help.  With laboured breath, I said, “No breath – I’ll breathe, I’ll be fine. “ Clearly, I was not fine!

Starting the conversations

Working with a counsellor helped me calm my thoughts. I realised that I needed and wanted to tell my parents and parents-in-law, as well as my children. My husband and I carved out special moments to tell each family member. It was an emotional but cathartic time –  my husband and I felt the weight lift from our shoulders. My panic attacks were lifting, and I decided it was time to tell my wonderful colleagues. No more secrets, I was all in.   

Deciding how to tell my work colleagues

I’ve worked at the same college for 20 years, so I consider many of my colleagues as friends and family. We teach subjects within the Creative Industries, so overall we tend to be open, creative and sensitive souls. Most of my colleagues have great empathy, and as a community, we are supportive of each other and our many teenage students. Having spent a long time in denial about my diagnosis, I knew being transparent would be empowering. 

Text messages and emails can sometimes be misinterpreted; however, I felt email was the easiest way to tell everyone. It meant I could really think about what I wanted to say. I wrote the email and then meditated on it for a few days before editing. I researched YouTube videos and webinars that I could share with my colleagues should they want to know more. Writing an email meant that I could speak as much as I needed and not be interrupted.  

The email

Hi All 

I want to share with you that I have MS (Multiple Sclerosis) I was diagnosed in 2019. It has been quite a journey for me, and part of my healing/acceptance is to share this with you. Some of you know already.  

It may be hard for you to see my MS as it is not obvious however every day I am battling, and I need to let you know so I am not on my own with this. 

I can be standing on my legs for half an hour or walking a short distance and then I am battling with what is known as MS Fatigue. This has been described like having the flu, jet lag, and a hangover all at the same time! You may see me stumble awkwardly; I promise I am not drunk! It’s just my proprioception is compromised; I find it hard to navigate in crowds and around random objects. You may find me balancing on one leg at the photocopier this is to strengthen my proprioception. These last two weeks have been particularly hard as I’ve been experiencing anxiety and panic attacks.  

I really am not looking for sympathy or for people to be sorry, it’s just incredibly important for me to be true to myself and share with you all. 

Good positive mental attitude, good friends and lots of laughs is all I require!! 

Beginners guide to Overcoming MS – https://youtu.be/OOdQ55IwjT0 

What is MS – https://youtu.be/Naecv3h868c 

Much Love 

Hayley” 

The reactions

I received lots of positive feedback. Here are a few that really stood out: 

You are quite remarkable – I am amazed that you are constantly cheerful, funny and caring of others when you have this issue to deal with. If there is anything I can do for you. 

Thank you for sharing your journey with us. Your openness and honesty are truly admirable. I appreciate your courage in helping us understand your experience with MS. Please know that you have my support and understanding. 

Thank you for sharing this, Hayley.  What a challenge you have before you.  I am on standby to help with things you will need particularly one-legged exercises and laughs! 

This is a brave and enabling communication to make Hayley – well done you! I know you can have utter confidence in our wonderful community of staff and know they/we will try and help and support you as best we can. 

Being authentic at work

My colleagues have supported me, and I am grateful they don’t make a fuss. Some may have forgotten about my MS, but maybe they just respond to me as the person I present: strong, steady, pragmatic, calm and emotionally supportive. My identity at work has not changed but I can now talk openly with my colleagues at work. They don’t always ask me how I am which I am happy about, but I know I can approach them if I need to. If the moment arises and it feels right, I will also talk to a student about my MS, and it feels good that I have no secrets and that I’m not hiding.  

The ripple effect of sharing

While there’s no legal requirement to disclose my disability at work, being open about my MS has not only empowered me but also opened conversations for others. A colleague recently shared with me that hearing me talk about MS made her feel more confident discussing it with her friends. She said that since our conversation, she has been able to explain MS more clearly and felt more understanding of how the disease impacts individuals. 

Knowing that my openness is helping others feel more informed and empowered is incredibly rewarding. It’s good to know that being honest about my journey is having a positive ripple effect beyond my own experience.

Join the #MSconversations

If you would like to join us in having conversations about MS, join the Live Well Hub, our free community platform to talk to others who ‘get it’.

Follow us on social media for more tips and honest conversations about MS during MS Awareness Week 2025:

• Facebook
• Instagram

Listen to Hayley talk about her experience on our podcast: S7E08 Open Communication about MS with Program Facilitator Hayley Baker | Overcoming MS