Multiple sclerosis: “I’m strict with my rest because without it, I can’t function at all.”

Could you start by telling us a bit about yourself? We’d love to know more about your background, your music, and how your passion for songwriting has shaped your life.

My name is Millie Gaum and I live in Sheffield, a city in the North of England. I moved from the South of England nearly 30 years ago to train as an art psychotherapist and have been here ever since!

My music journey began as a child when I learned to play the piano (my grandfather was a professional pianist, and it was a prerequisite in the family to learn!). In the mid-90s, at university, I joined a band as a singer. I loved writing songs with other musicians, but I was not a natural performer and I found it utterly terrifying being on stage! A few years after graduating, when my bandmates and I sadly went our separate ways, I set about learning how to use computer software to produce my own songs and record my vocals independently. Being able to do so from home really removed so many barriers to collaborating with artists from all over the world.

Songwriting has always been a passion of mine and I find it a great way to express and work through my feelings! I am an emotional person, some might say a bit of a drama queen!, and I find the process of writing my feelings into song makes them more manageable. I guess it is a kind of therapy for me!

When were you first diagnosed with multiple sclerosis? What were the early signs, and how did you feel when you first received the diagnosis?

I was diagnosed with MS in 2003 at the age of 30. During a routine eye appointment, I mentioned to my optician that I had a stye in my eye which was making my vision blurry. I used to get styes regularly, so I wasn’t worried, but my optician referred me to the hospital. My vision quickly returned to normal, but I attended appointments for various scans without any idea that there was anything to be concerned about. When I look back on that, I think to myself that I really should have asked questions as to why I was being referred to the hospital!

I continued working as an art therapist in a large psychiatric hospital, and I do recall having strange sensations in my feet as I walked down the long corridors, it felt as though I was walking on blocks of ice. I would also feel very tired on my 40-minute drive home from work. I now see that that must have been the effects of fatigue. At the time though, I had no idea that these were MS symptoms.

Eventually, I had an appointment with a consultant neurologist who told me that I had multiple sclerosis. He assured me that it was the benign kind and advised me to simply continue living my life and to not worry about it. I found the diagnosis a shock, and I was curious to know more about the implications of the disease. The neurologist had not signposted me to anyone who might be able to give me more information, but a doctor friend of mine arranged for me to speak with an MS nurse, and that was very helpful. I was able to ask questions and share my concerns. To this day I can get in touch with an MS nurse at my local hospital whenever I feel worried about something related to my illness. I am very grateful for this.

What does your current approach to managing MS look like? Are there specific treatments, lifestyle changes, or routines that help you maintain your health while staying active in your career as a singer-songwriter?

When I was first diagnosed, I started on MS medication, they were injections that I had to do myself and I really hated doing those, so it was suggested that I take part in a clinical trial for an oral medication. I participated in this trial until I was advised to stop when I decided I wanted to start a family. After the birth of my son in 2012, I decided, with support from my neurologist, not to go back on any medication. I see a nutritionist and follow a diet that suits my body, as I am sensitive to certain foods, and I also take various supplements which I believe support my health. I practice the Alexander Technique and see an Alexander Technique teacher regularly. I highly recommend it!

Over the years, through trial and error, I have worked out what I need to do to manage my fatigue, which is my most disabling symptom. I have the most energy in the morning, and so this is the time when I work on my music and other projects, as well as tend to the admin of daily life.

I have found that I need a nap halfway through the day, since I begin to get very fatigued and my brain gets foggy. So, after lunch I get into bed, curtains drawn, lights out as though it is nighttime, and sleep for an hour or two. I have a note on my front door for post and delivery people asking them not to knock between certain hours. My day revolves around this naptime, and I plan my diary around it.

I am strict about maintaining this boundary because if I don’t have this break during the day, I cannot function for the rest of the day. My friends and family know and respect that this is a vital part of my self-care and that without it, my symptoms could worsen. I keep to this routine no matter what is happening in my life, and I plan all the commitments that I can make and the activities that I can take part in around it to make the best of my day.

Has living with MS changed your perspective on life or creativity? What keeps you motivated and inspired?

Living with MS has taught me a lot about myself; I have had to learn to listen to my body and what it needs. Before MS, I used to race around and not give any thought to how I felt physically, my body just felt like a vehicle for my mind! Now I am much more in touch with how I am feeling physically and have become quite adept at conserving my energy! I have had to learn about setting boundaries and saying no. I am a natural people-pleaser, and I am still a work in progress, but I really try to consider what I am taking on before I agree to working on a project, for instance. I often think I can do more than I can, and I am prone to over-promise and under-deliver.

My MS has taught me to respect my own unique way of being in the world. I only have about 2 to 3 hours a day in which I can accomplish anything before I get too tired, and I have to choose wisely what I am going to spend those hours on! I once heard someone say that we can accomplish our creative work in a much shorter time than we might think we need, and I feel this is true. It is actually okay to live within certain limitations, and you don’t need to wait for prime conditions to make your best creative work!!

I don’t perform live for various logistical reasons, but I find that social media platforms provide a space where I can share my music and engage with other artists and fans without having to physically be somewhere. This is a real blessing for me! I do find it challenging to balance my health and my creative activities, I always want to keep going when I am on a roll with writing a song and it feels hard to stop. But experience has shown that if I push myself and go over my limit, then I will pay for it later down the line in terms of worsening MS symptoms.

I think it is useful not to compare yourself to others’ capacity. We are all different, and I find it is important to honour your own set of circumstances, as that’s what makes you who you are and shapes your art. I can’t live without making music, it is where I find myself, where I find reassurance and comfort. It is my way of emotionally self-regulating. I guess that’s what keeps me being creative, I just really need it for my own sanity!

Photo courtesy of Millie Gaum

How has the support from your family, community, fans, or fellow artists impacted your journey?

When I was first diagnosed, I found a lot of comfort in online communities where people discuss their symptoms and struggles with living with MS. I found it incredibly reassuring to read other people’s experiences and I reached out to lots of people and asked questions. I think just being connected to the MS world in whatever way suits you is helpful. I never wanted to join an actual in-person group, so I am very grateful for the internet!

There are also some great podcasts about living with chronic illnesses. There is something so reassuring about hearing people discussing their experiences, and being able to listen weekly means that you get a sense that other people are journeying alongside you. I also enjoy reading essays about disability and chronic illness. As long as I know that there are other people out there having a similar experience to mine, I feel less alone and isolated in my experience.

I also find it inspiring when I hear that someone in the public eye has MS, it somehow normalizes illness. Following artists and creatives online who have disabilities gives me a sense of belonging and pride. I have a few close friends who live with illness/disability, and I find it so key to my mental health to be able to complain to them about my symptoms, and they feel the same in return! I think that we must be able to talk about how awful things are when we feel at our worst, I really think grumbling is healing! I feel much better after a good bit of complaining with a friend!

I am currently working on a song with another singer-songwriter, Sarah Jay Hawley, who had a stroke some years ago, around this theme of illness, support, and friendship. We talk a lot about how lonely it can be to live with a chronic illness or disability, and we find that friendship is a vital part of keeping well. We are in discussions with an MS charity to use our song to fundraise.

My family have been a great help to me, supporting me in my treatment decisions and helping me out financially when I needed it, for which I am very grateful. Due to the way my MS affects me, I am unable to work. Being unable to work causes a great deal of financial worry and it isn’t always easy to access government benefits; financial stability can be very hard to find for some people living with chronic illness and disability. This is perhaps a lesser known or spoken about aspect of living with chronic illness/disability.

Are there any misconceptions about MS or disability that you frequently encounter? What would you like others to understand about living with a disability, especially in the context of being an artist?

It can be quite tricky to explain my illness, my needs, and limitations to others. Many people do not understand what it is like to have to look after yourself to such an extent. They might see it as me being precious about myself or that I am a person lacking in dynamism or courage.

My MS symptoms are ‘invisible’, to look at me you wouldn’t know that I have a chronic illness. It is sometimes hard explaining to people that I am struggling when I look okay. ‘But you look so well!’ is a classic line that people with invisible illnesses often get. I know it’s meant well, but it also feels as though my condition is being put in question or dismissed, as though how one looks has any bearing on what one is experiencing. However, the older I get, the more I own my illness and trust that only I really know my body and what I can manage. I am more confident and frank these days, and also much less apologetic!!

Fatigue is my main symptom, and I have to be really aware how much energy I am giving to people and make sure I have enough for myself. Because I am at home (and do my creative work at home), I find people assume that I am always free or in need of company. I think people project their own ideas of what it is like to live with chronic illness. I have had to learn to be clear about how much time I need for myself just to get through basic daily living tasks. I am finding that I need to put my creative work hours into my diary so that I do not spend the time elsewhere. It is all too easy for me to think that someone needs me and to stop doing what I am doing to help them instead of concentrating on my work. I think this is a problem for many women generally, we feel we must not put our needs and desires first, so this is a very good learning opportunity for me!

I am keenly aware of the barriers and judgements people with disabilities face, and I like to question and challenge my own and others’ ableist attitudes. In my work as a support worker and art therapist with people with physical/learning disabilities and mental illnesses, I was trained to understand the value of each person no matter what their contribution to society may appear to be. For instance, work is only one way of contributing to society. Everyone has value by the simple fact of existing, and each one of us impacts those close to us and our communities. A person in a coma will be impacting those around them, such as the hospital staff and their family members and friends who visit them. We all play a role in society, and no one of us has greater value than the other. Every person contributes and impacts society in their own unique way. We do not need to judge ourselves or others against what we might think it means to live a worthwhile life.

Finally, do you have any words of encouragement or advice for others living with MS or a disability?

I know at the beginning of my diagnosis, I just could not work out how to pace myself and it took me years to realise that pushing myself was not the answer. I think you have to be patient with yourself and know that learning to live with illness and disability is a big job! You will find many people out there are living the very same experience as you and you can reach out to them online. Many MS charities offer free helplines that you can call if you are struggling, I have used those in the past.

I have also found that if you scratch beneath the surface, many people are living with something challenging in their lives, be it emotional, mental, or physical. In some ways we all suffer with the condition of ‘being alive’. That takes me back to creativity and how it can be so healing and therapeutic to tell our stories, put our feelings into words, into music, into art, or into dance and movement. From the beginning of time people have expressed themselves creatively, it is nothing new!

Even though you can feel very cut off from normal society when living with chronic illness, you are never alone. People in the very same position as you are literally a click away. You help yourself and others when you talk about what you are going through in these communities. Remember there is healing in sharing your feelings!

A big thank you to Millie for this interview!

Don’t forget to check out her Instagram account.

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Take care of yourself!