Flourishing in the Creative World
Helen Hill runs two businesses, and is living with multiple sclerosis. Since going freelance she’s embraced her ‘multi-potentialities’ and is putting them to good use across different creative disciplines as a children’s author and illustrator, and learning designer with a focus on teaching children about climate change. I met her in her part of the world - Cullingworth, West Yorkshire - to find out more about how she’s juggling work and health.
When did you first get your MS diagnosis and did it change your outlook on work/life?
I was diagnosed on 25 October 2010 after 18 months of being blind in one eye and having what I now realise was vertigo. My first presenting symptom was always my vision fogging over and it was terrifying - especially when I didn’t have any answers initially. I was told it was ‘just a migraine’ for a long time but I knew something more was going on. Two weeks later I was also diagnosed with degenerative disc disease after five years of pain and being told I had sciatica.
Having been so active through my youth, and being a competitive athlete, I had an unusual response to my diagnosis - I went and immediately signed up for Nightrider - a 100km bike ride through London at night for charity.
We had a suspicion of what was coming with the diagnosis (there had been three options as to what was going on) and having initially gotten obsessed with doom scrolling on MS forums, I had got my head in a panicked place of thinking I would soon be unable to be very active or maybe even end up in a wheelchair, and so I think I wanted to prove it wrong. After 6 months I realised that only those really struggling with much more advanced MS tend to go on the forums and I was not expected to get to that point, so I withdrew from that online world.
I do think the diagnosis has been a big driver in why I do so much and definitely made me make the most of getting out and about, travelling and many hobbies for a long time. It gives you a real sense of time being precious and making the most of what you have now.
Where has it had the most impact? How does it affect you day to day?
I was very lucky for a long time that the MS was not particularly impacting my day-to-day functioning. Other than being eternally clumsy, some muscle problems, and being constantly exhausted, I could still do all the things I wanted to do. Some of these symptoms I had had for so long, I thought it was just the way I was and I was fairly used to them.
But when I started with the endless frustration of restless legs and the visual issues that was a different matter. Both of those are impacted by everything from how much sleep I’ve had to my diet and hydration, and how long I have to sit still - long journeys are a nightmare. So I have to constantly think ahead to try and prevent them. It is a constant game of experimentation to see what works and ensure that I have what I need to manage them.
The biggest ongoing impact is the treatment I have (more on this below) as I have to have a large injection at the same time every fortnight, so I have to bear in mind where I am when I need this, if I have to transport it (it has to stay refrigerated) and carefully schedule what I am doing in the following days due to side effects. The latter I have not yet mastered!
How did you become self-employed and why?
I had run my first business UnlikelyGenius on the side of my full-time work for a decade before I went self-employed full-time. I had never intended or even thought I could work for myself, it was just a little project to bring a bit of extra money in.
But as I struggled more and more in the corporate workplace and working in education, I got less tolerant for how I was being treated and the ignorant and prejudiced attitudes towards MS.
It all came to a head and was seriously affecting my mental and physical health. After a particular triggering incident, I quit my job without anywhere to go, just knowing I needed to get out. Two days later I got offered a contracting role - and have never looked back. That was Sept 2018 and I have been self-employed ever since, spending 6 years crafting two businesses that I love.
Working for myself has been life-changing - I realise now that open-plan offices were incredibly detrimental and exhausting for me (there is suspected neurodiversity too and I’m very sensitive to noises and smells), I was continually guilted about my many medical appointments and having to catch up, and I just never felt I fit in. Add in the MS fatigue and long commutes I did for a decade and… I was burnt out. I worked so hard but felt it was worthless.
Now I have flexibility for my appointments, insomnia, disturbed sleep due to muscle and spine issues, working with my energy levels, and work with amazing clients who respect me and my work, and my needs! It’s no coincidence that my medical appointments actually dropped from one every week or two to once every 6 months quite promptly with the change. If I hadn’t been diagnosed with the MS, I think I would still be ploughing away working for others and feeling like a failure.
Once UG was established and I was trying to have positive impact on planet and people, my business name was spotted on a Twitter hashtag by Sally Giblin, she emailed me to see if I was interested working with her on some books and games, and the rest is history. We now have a business across the UK and Australia running playful immersive climate workshops and experiences.
What is it you love about what you do?
Over the last 6 years, I have invested a lot of time experimenting with my businesses to build in more of what I love doing. There are many things I have tried and put aside, and new areas explored that I now can't do without. The fact that I have had the freedom to do this has been great for building my confidence and has been one of the biggest bonuses for me. When I left University I had little confidence, especially in my design skills and I lost my way for a while, but I realise now that I needed to find my fit in the creative world - and that was not in Graphic Design but in illustration and writing.
It was only a couple of years ago that I was introduced to the concept of ‘multi-potentialites’ in the TED talk by Emilie Wapnick. This was a revelation as I have always had multiple hobbies and talents and felt trapped by having to choose one degree subject, career route, etc. Having my own businesses allows me to experiment and go with my latest whims and interests, and has led to me offering a unique range of services that I am now fairly well-known for. The playfulness of this experimentation is also well suited to the message of both businesses, so I am practicing as I preach.
Since I was a young child, I have always wanted to have my own children’s book out in the world, so I can’t believe I actually get to do this for a living now. I hoard books daily and they fill the house, so I feel incredibly lucky to get to work both on my own and with other authors.
What are the extra challenges of living with MS and keeping a business afloat?
MS is a very unpredictable condition and it looks totally different for everybody. It can also look different each day, or even within hours. This means not a lot of people understand your needs and don’t know how to support you, or get frustrated with doing so. Unfortunately, when symptoms unexpectedly hit, I don’t have the energy or patience to explain what is wrong and so can sometimes just ‘disappear’ as I just want to get home to the sofa and my pjs.
In 2023 I had my first relapse in 7 years and had horrendous double vision and vertigo, resulting in my first-ever hospital stay, I was rapidly put onto disease-modifying drugs as a result. Despite all my many conditions and broken body, this is the first time I have ever had treatment such as this, and it is now for life. This has been the biggest mindset challenge I have had to deal with so far, and has resulted in horrendous side effects. The treatment I have is fortnightly, and due to its strength it knocks me out at least a couple of days every fortnight with flu-like symptoms, nausea and exhaustion. I’m still in a process of learning how to manage my projects, businesses and other commitments around this.
I do often think I could make my life a lot easier if I just did one thing because of this, but that would just be boring!
Please tell us about the mermaid!
For the official launch of the Be The Future Kickstarter last year we dressed as 13-foot-long reclaimed plastic mermaids who had washed up on the shores of the UK and Australia for World Ocean Day. We spent three months making these ourselves - mine features household waste, Sally’s is children’s party waste.
This exercise received such a huge response and reached an audience of over 25 million people and resulted in us touring events for a year as the mermaid. Due to the response and enquiries we had, we ended up pulling our planned Kickstarter to rapidly pivot the business in our new direction - offering playful climate education for children. The concept has continued to grow and we now offer immersive workshops, plus interactive exhibitions and are putting together professional development to build the confidence of educators in teaching climate change and sustainability.
What are your hopes and plans for the future, personally, and for the businesses?
I always find this a hard question to answer as I don’t tend to plan ahead - I very much go with the flow. However, after 3.5 years of research and development, I have huge hopes for the UK launch of Be The Future and the potential opportunities that are ahead. We have ambitious plans for where this business will go and it’s looking like some of them may actually happen this year, which is incredibly exciting.
After launching myself as a children’s book author-illustrator in late 2023 I have had a flurry of projects come in and I hope to continue developing UnlikelyGenius in that direction, in addition to the educational projects I work on. This summer I’m going to approach agents to see if I can get representation and hope to release the first of a mindset series for children that I have author-illustrated later this year.
Personally, I need to look after myself better now and continue with my many creative hobbies which give me such energy and recuperation time. I’m not very good at sitting still - so this is the closest I get. I have been managing to bring these craft skills into the businesses and mixed media and will definitely be continuing with making my ‘grown-up’ clothes full of monkey, sloth and toucan patterns.