How did your first come into contact with Flourish?
I first heard about Flourish when I was doing my 3rd year Biology degree – my lecturer Dr Erinma Ochu knew that I wanted to set up a social enterprise to help other people with my condition – I have HS (hidradenitis suppurativa) which is a chronic, relapsing, systemic autoinflammatory condition that causes sterile, deep seated, painful nodules that look like boils and abscesses. There’s no cure and it is difficult to treat. It causes significant pain, morbidity, disfigurement and has profound impacts on the person emotionally, physically, and psychologically but also affects your loved ones. Trust me it’s hard enough living what the HS does to you and exhausting trying to find a medical professional that knows what HS is or how to treat it! Suicide rates are really high in the HS community and I know this as I tried to commit suicide in my early twenties because of it but found there were adults and children like me.
This is why I decided to pursue my degree. I wanted to understand the science behind HS so that I could educate the medical professionals I met and back it up with research, but most of all to try to help others with HS in any way I can. These are reasons why I want to set up a HS social enterprise. Dr Ochu told me about Flourish and recommended I went down to one of their Soup events. I hate speaking in public but I did it and talked about my idea and was absolutely gobsmacked when I won the pot so I could buy a printer, ink and paper so I could carry on with my work.
I got to know Nickala who encouraged me to take part in a Flourish Mentorathon, which I did, Nickala became my mentor and later on I joined Time to Grow.
How has Flourish helped you?
In loads of ways, they have really built up my confidence. I am happy to talk about my work and participate now! This really helped with my mental health too… getting to know and talking to other women in a similar position – with kids, trying to make ends meet.
I’d always come away from Flourish events feeling revitalised. If I’d been stuck in my house working alone I would have lost my self-belief.
Before Time to Grow I knew nothing about the business side of setting up a project or venture – I’m a trained biologist and science communicator – but now I know about legal structures for social enterprises and I’m aiming to set up as a Community Interest Company to help other people with HS and people who care for them better understand the condition, tell their stories and get the support they need. I want to use my scientific knowledge and digital skills to enable people with HS and their lived experiences to inform and shape health research.
I have been creating all sorts content for Flourish’s How To Festival – editing webinars, making them look pretty, designing intro and outros, providing transcripts and captions for accessibility, promotional videos for social – which has made me realise I how many skills I have, and given me the self-belief that I can do this!
Doing this work gives me such a sense of achievement, and it also helps take my mind off my pain. Flourish has helped build up my confidence, self-belief by helping me realise the broad skills and what potential I already have.
How do you keep motivated?
That’s a tough one! I’ll be honest, with lockdown and my illness things did stop for a bit, I wasn’t as active posting on social media but was still there for others with HS, but the mentors, network and Flourish got me going, gave me the kick up my backside I needed…
Now I just keep chipping away at what I can do – if I’m having a bad day with HS and, say, can’t sit down, walk or can’t get out the house I’ll find a way to do something, so I might lie down on my side and do some work on the computer or my Iphone.
Also, when I hear about other people who are doing great stuff it really gets me going. I love helping people so love working with Flourish is really motivating because I know I’m helping people – that really keeps me going.
What is your proudest achievement?
I’m really proud that I’m a voice for others with HS – I’m a patient research partner collaborating with other HS PRPs, HS specialist dermatologists and researchers and the work we are doing as it will help so many others with HS… but I think it has to be the #MillionsHidingHS exhibit for 2018 Manchester Science Festival Community Science Showcase that I did with people from the international HS community.
I crowdsourced stories, poems and art internationally via social media from people with HS and their loved ones and I wrote a scientific piece about HS. Loved that we co-created 5 volumes of Millions Hiding HS, posters, banners and we promoted an app by the European Hidradenitis Suppurativa Foundation (EHSF) and promoted it all on social media.
The content is now on the University of Salford Figshare Repository so people can continue to access it and get a better understanding of the condition. We even tried to translate it into different languages! The exhibit was also part of BLASTFEST and the Science in Public conference.
But my proudest moment WILL be when I get my CIC up and running and I’m sustaining it as a business! Watch this space!
Any tips to share with other people looking to start their own projects?
Don’t look at the mountain of everything you have to do all at once, chip away bit by bit. Also, get in touch with the Flourish team – you’ll never look back!
Get yourself along to a Flourish event, learn the skills you need, meet the people you need to connect with, get new ideas and boost your confidence.
Which elements of Time to Grow were particularly useful?
Because I was stuck in the house at the time, I loved that it was online. Even though I was battling my HS and profound anaemia it meant I could still learn and join in (although I love the in-person events too!). The fact that you can work it around kids too was brilliant. Salford University is supportive and offers business training but I can’t attend because of my HS and caring commitments. Flourish made this really accessible for people like me.
All the training materials and webinars were fantastic, really informative, you basically got told everything you need to know to get going. I also love that you can watch again – sometimes need to go back as there is so much to take in.
It’s not just the information and the learning, it’s also the feedback and support you get from other people, the social element, and finding out what others are doing that spurs you on.
Anything you’re now doing differently?
As my skill sets have grown it’s given me new ideas. In the past I would never have had the confidence to offer digital training programmes, but now I can see there’s an opportunity there and I will be able to use the skills I already have to bring in an income that way to support my venture.
Has anything else changed for you?
I’m more confident now. My confidence plummeted in the pandemic, I was stuck in the house with a 5 year old, supporting my family, my HS worsened and all aspects of myself disappeared. Going on Time to Grow and talking to other women made me realise I wasn’t alone. I got my head back into it, stopped doubting myself and realised I can do this!
If I hadn’t done the Time to Grow programme I’d have binned all this off by now and given up!
You can read more about Michaela’s research and follow her work on her website and Twitter. For more information and support relating to HS see HS Action Together Facebook page.
