Motherhood and MS: Living with multiple sclerosis is a family affair 1 week ago

Motherhood and MS: Living with multiple sclerosis is a family affair

Brought to you by MS Ireland

A new podcast will be an invaluable resource for the MS community

MS Explored - The Podcast is a new three-part, weekly podcast series that will act as an invaluable, easily accessible resource for those living with and managing MS.

Developed in response to the urgent need for easily accessible information resources for the MS community, the podcast is created by MS Ireland in partnership with Novartis Ireland and aims to educate, advise and provide information to the 9,000 people currently diagnosed with multiple sclerosis in Ireland.

Hosted by MS Ireland’s Aoife Kirwan, the series features top healthcare experts, as well as people with lived experience of MS.

Aoife lives in Kildare and has one son, Adam who's 13. She works as Information, Research and Advocacy Officer at MS Ireland and was diagnosed with releasing remitting MS in 2011, as she explains: "I had experienced a number of sensory symptoms in the months before diagnosis — it began with a numbness in my index finger. This spread into my thumb and up my right arm. I was seen by a GP who felt it could be attributed to something like to stress, or perhaps the position I slept in at night. I started to experience numbness on the right side of my face and would accidentally bite myself on occasion. The numbness spread to my feet and it felt as though I had a pair of loose wellies on. Again, I went to the GP and this time I was put on a course on anti-inflammatories.

"The symptoms came and went over a very busy few months for me. I was in my final year of my undergrad at the time, so I elected to ignore some issues stating that I didn’t have time to deal with them and thinking they were most likely caused by stress anyway, so if I could just get more work done the stress would go away and so would the symptoms. A couple of months later, my vision became affected. Over the space of a few days I almost completely lost the vision in my right eye. I went back to my GP again and this time I was sent for investigations that led to my diagnosis."

Finally getting the answers to her health concerns was understandably a difficult time for Aoife: "It was bittersweet. I was glad to have an answer but it was a very difficult time in many ways. I think it’s fair to say that nobody wants a chronic illness. When I was given this ‘forever’ diagnosis at the age of 23, I was gutted. I felt robbed.

"I was very keen to keep things as normal as possible for myself and my family, so I got on with things. I went back to college, I continued all of the things I would have done before. The impact for me was usually late at night. I was great at keeping myself busy during the day and even if I did want to talk about the diagnosis or any fears I had, there were people there for me - but night time was tough. When I was alone with my thoughts I did worry about what could happen down the line. I have conflicting feelings about the diagnosis, on one hand I feel it was an incredibly isolating experience - nobody knew what any of it felt like for me but on the other hand, I felt so supported by my family and the group of friends I had supporting me, especially in college."

Aoife's son, Adam was just three years old when she received her diagnosis: "I was very concerned about how the condition might impact my ability to care for him. I feared it would prevent me from being the mother I wanted to be. We quickly adapted though."

Explaining how she communicated the news to Adam, Aoife says: "You can’t really explain MS properly to a three-year-old, but he understood that sometimes I would get tired and would need to rest - and we did name it as MS, I felt that was important. I thought it would be easier to normalise it from that age. As he got older, we had various conversations about MS, normally in response to questions he would have or observations he would make. I was always honest with him, providing information and answers to his questions that were appropriate to whatever stage he was at. Adam has always handled the fact that I live with MS very well. He shows great empathy to others generally but I think it has made him more aware of the fact that you just don’t know by looking at someone, what they are dealing with or what’s going on for them. At this age, he has a very good understanding of what MS is and how it can impact people living with it."

Aoife has a very positive approach to the future with Adam: "I do worry about what could happen down the line and about any potential burden I might place on him due to my condition, but when this happens I remind myself that all parents, whether they are living with a health condition or not, likely feel similar things from time to time. I do try to keep myself grounded in the here and now. I had so many fears at the time of diagnosis and so far, none of them have become an issue. I don’t think it’s useful for me, or Adam for me to use my time now worrying about things that might or might not happen."

MS doesn’t just affect the person living with it. Explaining how her diagnosis impacted her family, Aoife says: "Thinking back to diagnosis, the one thing that never fails to stir my emotions is thinking of the impact it had on my family. We were all devastated by the news. As the youngest in the family, I was probably used to things being fixed for me and for someone to step in to help me when anything was too hard. This couldn’t be fixed and it also wasn’t something they could do for me. I think each of them would take MS on themselves if it meant I didn’t have to live with it, but equally, I would say the same — if it had to be one of us, I prefer it’s me. It was difficult to see their hurt and the impact the diagnosis had on them. While none of us can help the fact that I live with MS, my family are an incredibly support."

Aoife manages to maintain normality in her busy life, with the help of her family: "Generally, I think I have a very typical life for someone my age. MS has not interfered with me achieving any of the goals I set for myself, though I realise this is largely due to the support I have, from my family in particular. I work full-time, have a child and up until a few weeks ago I was in a postgraduate programme — so life is busy and sometimes fatigue and other MS issues can negatively affect me. My family are always ready to step in and help when I need it. Whether that’s doing the school run for me, keeping things ticking over at home generally because I’m too fatigued to do things for myself, they are always ready to help out."

Heading up the podcast is clearly a passion project for Aoife, who understands how vital a support it will be for many: "Having lived with MS for several years, I know first-hand the impact a diagnosis can have on both your mental and physical health. MS Explored – The Podcast is an invaluable resource for the MS community."

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Dr. Eddie Murphy is a clinical psychologist and mental health expert. He appears on MS Explored - The Podcast as a guest, this week.

Speaking about the impact receiving a new MS diagnosis can have on a person he says: "When people receive a diagnosis, they can experience shock, fear and anxiety. I think it's important that hope is brought through each phase of the conversation with clinicians and therapists. It represents a life stressor and a massive transition. It's about the individual getting appropriate supports to help them with that transition."

An MS diagnosis doesn't just affect the individual, as Aoife shared with us above. Dr. Murphy says controlling the controllables will help manage the fear around how it will impact family life: "If an individual is in a relationship and has children, there would often be concerns about energy management, fatigue, further sickness, length of illness, numbers of remissions — they all come under fear. It's the fear of the unknown and the future.

"It's about controlling what you can control, as opposed to living in a state of everlasting fear, because you're living in that sphere of concern, as opposed to your sphere of control. So it's about leaning into what you can control, around good sleep, nutrition, taking on board what your medical team are saying and getting support from others — like linking in with MS Ireland."

When it comes to telling others about your diagnosis, Dr. Murphy has some sage advice for communicating the news: "It can be very challenging, particularly the first time. The more times you say it, when you disclose to one person then it's easier to say it the next person. Decide who you want to talk to about it, because you might not want to be identified by a label of having MS. So who you talk to, how wide that circle is, and how you talk about it are both important.

"Communicating in a factual way is key, because there are a lot of myths. Then signposting people to MS Ireland if they want more information."

Listen to MS Explored - The Podcast here or wherever you find your podcasts and don't forget to rate and subscribe | For more information about MS, visit MS-Society.ie

Brought to you by MS Ireland