The emotional impact of an MS diagnosis can be hard to deal with for the whole family. The Bunby’s (Natasha, Marc, Deon and London) tell us about the ups and downs of living with MS, how they support each other and their advice for other families.
I did feel extremely scared when I was diagnosed with MS as I didn’t know anything about the condition and when I looked it up on the internet, all I could find were really negative things. I was put in touch with our local MS nurse and she was an incredible person. She provided me with lots of information from the MS Trust. It takes time to come to terms with an illness, but over time I’ve learnt my MS is a tiny part of who I am and it won’t ever be the most interesting thing about me.
My MS has been very active and not responsive to multiple treatments, which is not the case for most people, so I’ve been very unlucky. I can now no longer walk and I struggle with my hands functioning and I’m also bladder and bowel incontinent. But there are so many incredible adaptations available now that help me to live a very independent life despite these problems. I’ve had to learn to adapt and everyday I focus on the things that I can do, not the things I can’t do.
Take strength from each other and use all the resources and information that’s out there to support you
Coping with MS as a family is hard at times, but we’re a close family and we support each other. We have all learnt to adapt together. When it comes to juggling parenthood and MS, I am careful with how I plan things and I have to be very organised. My son London spends the most amount of time with me as he is only 12 and he sees my struggles a lot more than anyone else does. I try to keep positive, especially for my children as they are my world. Deon is a teenager so he is off out a lot and I'm pleased that he still does normal teenager things and is happy. London and I spend lots of quality time together; we go to the cinema, out for coffee, I take him swimming and bowling or he takes his bike out and I go out in my wheelchair. They both can’t remember me before I had MS, so for them me being in a wheelchair is our normal.
My advice for other families living with MS is to be there for each other. Don’t push each other away and if your children don’t always want to talk to you, don’t force them to. Take strength from each other and use all the resources and information that’s out there to support you. MS has changed me but it’s not taken away my life - I won’t let it do that. As a family we still have a great life together and we will keep going together, united to keep living our best lives.
I can’t really remember my mum not ever having MS, as I was so young when she was diagnosed. If I was describing MS to others, I would say it’s scary sometimes as it stops my mum's arms and legs from working properly but it doesn’t stop her doing things with me. We still have lots of fun and laugh a lot together.
Our family life has changed, as we now have a stair lift, hand rails and a wet room in our house. It’s made us change our car as we have a special family car with an electric ramp where you press a button and the boot opens and the ramp comes out. Mum drives it via hand controls instead of her feet. There have been positive changes too; we have done fundraising for the MS Trust which I really enjoy as it makes me feel like we’re helping other families like ours.
To support my mum, I help with washing up, make mum drinks and sometimes I help her put the shopping away. These things make me feel helpful.
My advice for other young people who have a mum or dad with MS is to talk about your worries as talking really helps. If you can, do small things to help them, as that will help to make you feel good as sometimes MS can be tough and make you feel helpless when you see a person struggling. I talk to mum a lot as she makes me feel better when we talk and we have lots of cuddles.
I’d heard of MS when Natasha was diagnosed but never really understood it, and we are all still learning together. We try to keep as normal a family life as we can as we don’t want the kids to miss out on anything. The biggest challenge we’ve faced is getting Natasha the help and treatment she needs. She hasn’t had any treatment for nearly 18 months and has no neurologist. MS nurses do all they can, but it’s heartbreaking to see that she’s been left with nothing and we really worry what’s next. We are very lucky to have the NHS, but the system is just so stretched and you don’t notice it until you have someone who can’t access the support they need. Where we live it’s a postcode lottery.
Following the diagnosis, you initially question why her? Why us? Natasha is very unlucky as she has very active, aggressive MS, and this absolutely isn’t the case for most people. We both know that as time goes by the condition is going to get worse so we do try to cram in as much now as we can. I believe it has made us stronger and closer as a family. Like any family we have good days and some very challenging and tough days, but I wouldn’t change her for the world. She is everything to me and the boys.
Following the diagnosis, you initially question why her? Why us?
MS is a terrible disease but it doesn’t change your partner. There is help out there, from the MS Trust and the MS Society, so I would say to other families, don’t give up. Keep asking for the help you and your loved-ones need. I find support through Natasha mostly, she always knows what to say and she always makes me feel better, when it should be the other way around.
I felt confused and upset when I found out about my mum’s MS diagnosis, because I didn't understand what MS was and it didn't seem like anyone could explain it to me. I would now describe MS as an illness that won’t go away. MS stops people’s bodies working properly because their brain can’t tell their body what to do.
Since mum’s diagnosis, we have had to move to an adapted house and mum has an adapted car. I help my mum by doing bits around the house and do those little tasks which will be easy for me but very difficult for my mum.
MS has brought our family closer together and made us realise how lucky we are to do everyday things that able-bodied families can do.
My advice for other young people who have a parent living with MS is not to overthink things and make sure that you ask questions and talk to people as bottling up all of your emotions will not be good in the long run.
Dealing with MS as a family
MS affects not only you, but those around you as well. If you have children in your family, you may feel a little worried about how and when you should talk about your MS with them. Try not to worry! On the whole, discussing your diagnosis with your children in an open and honest way can help the whole family get used to MS and understand what it means for them. You will need to judge when this conversation would be appropriate and how it should take place, but we have resources to help you. We have lots of information to help you start the conversation, and have answers to common questions that children and teenagers may ask. Our free publications, Talking with your kids about MS and our Kids' guide to MS are written to help children and young people understand MS and what it might mean for the whole family; you can order or download a copy here.
If you’re the partner of someone with MS and reading this, you might feel a little concerned about how MS will impact your relationship and how you can be supportive, while also giving your partner space to adjust. There is no formula for what is the best approach as everyone is affected differently. A willingness to listen and help, and sensitivity to their individual needs and wishes, are the cornerstones of providing appropriate support. Our resource, Someone I know has MS, has information to help you both come to terms with the diagnosis and what it might mean for your life together.
The impact of Covid-19 on the mental health of people with MS
5 May 2021 - 00:00
In April 2020 we shared a research study with members of our Facebook group. The study was conducted by the University of Reading and looked at the impact of Covid-19 on people with multiple sclerosis. In this blog we take a look at the findings.
"Starting a podcast in lockdown helped us take ownership of the situation"
23 Apr 2021 - 00:00
Comedian, Jeanette and Poet, Lytisha, talk about how creating their own podcast, about life with MS, led to lots of laughs, feelings of empowerment and a sense of community during lockdown.
Twelve year old Lacey hasn't been able to hug her dad for a year
23 Apr 2021 - 00:00
Before lockdown Lacey visited her dad every other weekend, but Covid restrictions have meant she’s not been able to visit her dad in his care home and give him a hug since March 2020.