A Chronic Entrepreneur: Susanne Gervay
So many people diagnosed with Chronic Illness have a moment where we decide that the disease won’t beat us, that it will no longer be the story the defines us. Instead, it becomes part of our story. It is also the part of our story that leads to so many wonderful adventures that perhaps we wouldn’t have had if it weren’t for our Chronic Illness. Today’s Chronic Entrepreneur is Susanne Gervay, a prolific children’s author whose books deal with many of life’s challenges including bullying, inclusion, humanity and refugees. Susanne certainly has a gift with words and her heart, you can read her story below –
What’s your Chronic?
Rheumatoid arthritis.
Where/when were you diagnosed?
As a uni student in first year at age 19.
What does being an entrepreneur mean to you?
Embracing new ideas, being brave and taking the risk to pursue them with creativity and hard work.
What came first, the chronic or the entrepreneurism?
Chronic.
How did this path come to you?
I love the arts, heritage, kids, and believe in the power of story to be friends to kids as they navigate the rocky but amazing road of life. My parents were post-war refugees and lost everything. They faced terrible struggle and trauma, yet they had the courage to build a new life with no English, no money and their education unrecognised. My father was an entrepreneur and built up a fashion business. So I always knew I could do something too.
Did you go through any sort of 12-stages of grief with the diagnosis or take it in its stride? How did the process manifest itself? Did you immediately reassess your life?
At 19, it was traumatic when I couldn’t move my hands and I was such a keen sportsperson. I cried, read books and then decided I would survive with this illness. I had many procedures, some of them challenging, like steroid injections in my hands to control pain and enable me to move. I had to do exams in the ‘sick’ room at the University of Sydney so I had extra time to write. But I passed my exams. Very few people knew or know that I have RA (rheumatoid arthritis) and the other chronic illnesses that would add to the auto immune diseases that were part of each day – Hashimoto’s, Sjogrens, multiple cancer survivor, diabetes, allergies which at time led to anaphylaxis… it was just part of the course but I always felt that I had choices.
I went through grief at the start and just went on to manage whatever happened. There was no choice. So I didn’t go through the 12 stages of grief. I always thought, at least I didn’t go through what my parents did. I had hope, unlike so many in war and third world countries.
Did you seek out or join organisations representing your chronic for support or did you find comfort and answers elsewhere? What would you recommend in hindsight?
I got support from the personal exploration of writing. It is an incredible way to make sense of the world, cry and laugh, gain insight to pursue my dreams.
For others, support groups are important. It’s just I didn’t have the time, especially when I was in a terrible divorce, with two young children, running a business and having developed breast cancer. I just had to keep going.
How have you changed, if at all, in your relationships, decisions and values?
I have always believed that chronic illness won’t define me in work and friendship. However in terms of my love life it has impacted me badly. I don’t feel that I can ask someone to go on my journey with me. I keep a lot of my chronic conditions private and in the end it hurts relationships. I still find that aspect difficult to manage.
What is your life philosophy and has this changed?
Since I have had major chronic illness since the age of 19, and as a child I had serious allergies, I can’t imagine living life any other way than I do. My attitude is to make the best of it. When I am unwell, I take it easier and work from home. When I’m feeling better, I go out and do what I need to do and embrace it.
What do you wish you’d known before?
I resisted a lot of medical help at the start. I didn’t allow others to know and help me. It’s okay to have friends travel with you on your journey.
Are you on any treatments? Why/why not?
Yes, a lot of treatments and very grateful for them. Without the intense treatments which continue to this day, I would be in serious trouble. So, thank goodness for modern medicine.
What advice do you have for others starting out on this journey?
Don’t let the illness be your main thought. Manage it, emotionally and medically. Always remember you are not the illness. You are a person and you have a lot to give and receive.
What is a ‘bad day’ for you?
When I get an attack, it is crippling and so painful. I can’t stand at times. I have broken down crying in private.
What do you do on a ‘bad day’?
I’ve learnt over the years what to do. Take extra medication, bandage the joint in trouble – a knee or ankle etc. – try to minimise what you have to do that day. Work on the laptop. It’s hard and the attack can last for weeks. It was worse when the kids were little and I was a solo parent. However, I just get on with what I want to do.
How do you deal with stress?
I swim regularly now that my children have grown up (3-4 times a week). It places no pressure on my joints and gives my mind a break. I see my family and friends. Work on new projects. Translate my experiences into story.
What do you struggle with the most?
Exhaustion, which is part of the condition, as well as attacks of swelling.
What are you most proud of?
My children who I adore and who have become such outstanding adults. I am proud of being a children’s author and receiving an OAM for my services to children’s literature. I am proud of restoring heritage buildings that would have been lost to Australia – the Residences in Centennial Park are now a wonderful asset to our community and a successful accommodation and event business.
Who are your back up dancers?
My children.
Best bits of being a Chronic Entrepreneur?
Developing endurance and the focus on goals.
Worst bits of being a Chronic Entrepreneur?
It’s just so hard at times.
Are you a 5-year planner or are you winging it?
Winging it, but trying to plan.
Dream weekend plans and have these changed?
I want to go away with my daughter to health spas and travel. We have such a great time and she understands my chronic illness. She’s seen it a lot of times.
Ultimate dinner party guests?
Writers and creative people. They are my friends and they’re amazing. I love them.
What advice would you give your younger self?
Focus earlier on your goals.
What’s next?
Another book, inspiring kids, working on creative projects.
How can people find you?
www.sgervay.com
Instagram – https://www.instagram.com/susanne_gervay/
Let us know what you think below and share your story with us on Instagram tagging @achronicentrepreneur and using the hashtag #achronicentrepreneur.
