A shared condition, one woman’s story
Grace Sanders features in a new documentary about her experience with MS. Here she tells how the experience – and sharing her experience – has helped with the highs and lows.
Making the documentary
I adored making the documentary, it felt like girl power with the four of us – me, Annika, Ina and Shiv. It really felt like they cared about me.
Sometimes when people know you have MS they can treat you a bit like you’re stupid. Or they might treat you like a porcelain doll. It’s a fine line from showing care to being patronising, but making the documentary never felt patronising. And that helped me to open up more about my condition, even moments I don’t like to talk about, like the sad parts.
Just after making the documentary, my dad died. It was really sudden. I feel I wouldn’t have coped with it as well as I did if I hadn’t had that opportunity with the film. It gave me a real boost and made me feel really strong. Because while I was going through this awful thing, I also had a loving experience with the girls I made the documentary with, and with my little girl.
Go to the audio-described version of this video on YouTube
Sharing your story and finding acceptance
Speaking out and reaching out can help. Me, I really need to talk about it. But Ι don’t want someone to think they need to talk publicly to feel better. My close friend, Rachel, had MS for about five or six years before I was diagnosed. She doesn’t talk about it publicly. But she did speak to me about her MS – long before I was diagnosed. And that also helped me.
By talking and being herself, when I did get the diagnosis, I thought of my friend and I knew I’d be fine. I’ve done a talk since then called ‘I want to be someone else’s Rachel’. She'll never know how much it helped me.
I hope people watch this documentary and find some happiness within it. Life with MS can be exhausting, frustrating and generally a bit of a kick in the teeth. So I hope this glimpse into my world and my MS can help people to better understand how life with MS can be.
We are more than our MS
Seeing someone living with MS can give you a sense of the reality. It’s not all 'doom and gloom' that sometimes people seem to focus on. It's a shit thing, but I’ve always felt I don’t have to let it become my personality.
Ever since I was a little girl, there were different situations I was part of. All sorts of labels that could've been attached to me – living on a council estate, from a ‘broken home’... But I didn’t let them attach those labels. It’s how we choose to cope with those situations that defines us.
I’m always going to be a 'bright side of life' kind of person. You’ve got to go with it, work with it, do what it needs, be friends with it.
When I was younger, I was a bit embarrassed about everything. When I was getting free school dinners, I didn’t want people to know, I would try to hide it. My dad was an alcoholic and I'd try to hide this. Now I’m older, I just think you have to own it because no one else will. It’s better for you to put information out there in the way you want, before others make assumptions.
Pregnancy and MS
Every six months I have an infusion. And for the first three months after each infusion I’ve been advised not to get pregnant. Luckily for us, I fell pregnant really quickly the first time. But now I realise that’s not very common. It’s very different now when we want a second baby – trying to navigate that three-month timing – and with a toddler.
Read more about pregnancy and MS
Being pregnant is doable for women with MS. It is something we can do, but timing it with the drug treatment does make it harder.
MS has never stopped me from wanting to be a mum. I also knew MS wouldn’t define me as a parent. My parents had huge issues. And although there might be many reasons why we shouldn’t have children, I don’t think MS is one of them.
I’m aware of my limitations. But in regard to fatigue, what I lack in energy I make up in other ways. I can sing songs from Frozen like a goddess.
Ι would say to other people thinking about this decision "have faith in yourself". MS doesn’t define who you are. It’s not your entire personality or the only way you can make decisions. Give yourself a lot of space and time and put all pressure in the bin.
There's no such thing as specific path, so get those ‘how it should be’ narratives out of your head. It doesn’t matter if you can’t jump up and down or sing. It’s about love and structure - that's what makes you perfect in your children's eyes.
I started a YouTube channel when I was diagnosed and I met a lot of people. Lea was one of women I met and she was seven months pregnant. To have her to talk to and give me advice and strength, to compare and share with, made a huge difference.
