#MSMakesMe want to speak up

Fri 21 April 2023

Terri-Louise Brown

Terri-Louise was diagnosed with MS 7 years ago. She talks about how MS has changed her, and how it’s inspired her to speak up.

I’d been misdiagnosed five times before I was told I had MS. When I finally got diagnosed it screwed me over a bit. If I’d known I had MS before, I would have slowed down.

But ultimately, my diagnosis slogan is 'without peace, there is no understanding'. When I got diagnosed, and I had answers, I finally felt at peace.

Managing my mental health

Dealing with my mental health wasn’t always easy, especially in the beginning. When I was first diagnosed I went through five stages of grief very early. I believe that was because I was already witnessing my brother fight the condition.

When I go places, I look able bodied. Not feeling disabled enough to feel seen or heard has a mental impact. Friends, family and colleagues sometimes forget I have MS.

But I believe when you speak negatively about something, you give it power. So I refused to give it power, and it’s because of that that I’ve been able to start my own community.

#MSMakesMe resilient

I’ve had to do the work to get to where I am now, and it hasn’t always been easy. I had my son, I believe he was my reason to keep on going. MS makes me resilient.

I sometimes pour from an empty cup. I have learned to take a pause before I am involuntarily paused. I’ve had to learn when to stop and when to say no. I’ve got a son, I’ve got a 9-5 job in Adult Social Care. I can’t do everything.

Last week I had to give myself a moment. I never feel like I get a chance to just sit there and be present. Sometimes talking about MS can be triggering and taxing. I love doing it, but I can’t do it all the time. It’s not my whole identity, sometimes I just need to remember who I was before I got diagnosed.

How MS has changed me

I enjoy speaking out about MS, and I’m driven on my brother, who was diagnosed with MS 5 or 6 years before me. He’s the reason I set up my charity ‘Talks With MS.’

My brother pretty much only has his hearing now. Aside from that, he isn’t able to function. I wish he had that same support I do and the same community I’ve created when he was first diagnosed.

#MSMakesMe think outside the box

I’m boundary-less. If I want something I go for it. If I didn’t have MS, I would have never applied for my current job or published a book. MS has made me push more boundaries.

Six years ago, starting a charity was never on my list of things to do. But here I am! We’re one of about two Black led MS registered charities in the UK.

MS makes me think outside the box. It makes me want to speak up and not stay quiet.