Hear my voice | My experiences of growing up with a dad with MS

This blog – published to coincide with MS Awareness Week 2017 – comes from the daughter of someone who lived with MS for 27 years and explains what it was like for her. The compassion and the determination to not let her father’s condition be a barrier to their obviously loving and special relationship is testament to the fact such long-term conditions may play a huge part in the life of those with the condition, and their loved ones, but it doesn’t define who they are:

“My Dad, Tony, was diagnosed with MS in 1986, when he was thirty-five. I was only two at the time and therefore I have no recollection of his diagnosis. I am not sure when I first realised that my Dad was not like other Dads.

“One of my first memories that I have of my Dad’s MS is from when I was about four. I remember him coming home from work and collapsing into a chair. I remember being confused at why he could not stand up and trying my best to help him.

“Given how young I was when my Dad was diagnosed, I never had ‘the talk’ where it was all explained to me. My knowledge of his condition came from things which I heard, and as I got older, things which I looked up and read.  

“My Dad and I had an incredibly special relationship. A relationship that I cannot put into words, but one I feel very privileged and blessed to have had. Friends would often comment on how nice it was that we were so close, and I am proud to say he was one of my best friends.

“Our relationship could be described as symbiotic. I would help put his shoes on, he would give me great advice on life. I would stand in a long queue at a bar, in exchange he would pay for all the drinks. We used to talk regularly on the phone and meet at least once a week for a Daddy-Daughter date, in the pub of course.

“Our dates were centred around a mutual love of ale. Anyone listening in on our conversations would have probably thought how boring we both were. We would talk about the hoppy notes in our pints, the latest goings on in Coronation Street and the politics of sport. All things that nobody else wanted to converse in.

“Also, nobody found our jokes funny. Both of us on the other hand would be crying with laughter. Our special bond proves that neither my Dad, or our relationship, was defined by his MS.

“If asked to describe my Dad I would use words such as witty, generous, intelligent and like me, stubborn. If asked to describe his appearance I would immediately think of his giant tash and cheeky grin. The terms MS and wheelchair, though obvious to a stranger, are the last things that would enter my head.

“As a child, I think that the thing that I found the hardest about having a parent with MS was not being able to go on day trips and holidays like the other children at school. My Dad used to get very nervous about going to new places – what would the disabled access be like? Would he be able to get into the place? Would there be a suitable disabled toilet?

“Fortunately, the world is a different place now than it was in the 1990s. The laws are stronger regarding disabled people and with the internet we can readily access information and views on disabled facilities.

“If a parent with MS, or their child, asked me for advice, two things would spring to mind. Firstly, be open with each other. The approach to this will obviously be dependent on the age of your child. Openness and honesty are the best policies.

“Children are often stronger and more resilient than we give them credit for. They are likely to pick up on the fact that something is going on. This generation are growing up during the technical revolution, with ‘Dr Google’. If you do not have the conversation with them then they may turn to the internet for advice and they may come across something which may scare them. An open relationship will make them feel as if they can ask you questions. You are the best judge of how, when and how much to tell them, and how they will react.

“I have not seen them myself, but the MS Society has produced lots of free resources to help with this conversation. There are books available – ‘Our Dad makes the Best Boats’ and ‘Our Mum makes the Best Cakes’. A series of YouTube videos called ‘Annie and Dan talk about MS’ are also available.

“Secondly, please, please never feel guilty about your MS. My Dad apologised numerous times for his MS. There was absolutely no need. He did not choose to have MS, nor did he do anything to cause it. I have never looked back at my childhood and thought that it suffered because of his MS.

“As I have previously said, my Dad and I had the best relationship. Whenever he had a hospital admission I would try to be there for the visiting sessions, often hiding behind the curtains in-between. He sometimes got upset and said that he was holding me back from doing better things with my friends. However, there was nowhere else that I would rather be. Also, given the fact that I have never been the coolest of people, I was not exactly fighting off other offers!

“I certainly never loved my Dad any less because of his MS. If anything, I loved him more because of the strength and bravery that he demonstrated.

“My Dad passed away in September 2013, after contracting sepsis. Not a day goes by where I do not think of him and miss him. After all, there is nobody I can think of who would like to chat about who pushed Ken Barlow down the stairs in Corrie!”

Jennifer – from Chelmsford