A Chronic Entrepreneur: Dara Shashoua
Dara Shashoua is the founder of Byzantine Design – a Melbourne-based store that curates tiles from across the globe to service Australia. She is also the founder of A Chronic Entreprenuer – which began out of her passion to share the stories of those living with chronic illnesses and how they’re thriving each and every day, by living their lives and doing what they love. Here, Dara shares her story of discovering her chronic – multiple sclerosis – how it’s changed her life and how she lives with it today.
What’s your Chronic?
Multiple Sclerosis.
Where were you when you were diagnosed?
In Melbourne, three months after I opened my store – Byzantine Design.
What makes you an Entrepreneur?
The desire to create change in my industry. That, and the fact that I don’t enjoy working for others anymore.
What came first, the chronic or the entrepreneurism?
Entrepreneurism. The chronic came to remind me to look after myself otherwise I wouldn’t be around to enjoy it all.
How did this path come to you?
I always thought I could do a better job than everyone I worked for. Isn’t that how most entrepreneurs start?
What do you wish you’d known before?
The impact of stress on the body. It’s incredible what toll stress takes on the body.
How broken the traditional medical industry is. As a society we put doctors on pedestals, believing every word they say. At the end of the day, they’re human beings who have studied the science behind the medicine and a lot of the times are very slow on the uptake with natural treatments because you have to wait for science to approve it. Science takes about 10 years to prove things. It’s just not an efficient way to treat a human being. We should be looking at a person as a whole entity, not as parts.
The effect of food on the body and how, as a society, we have allowed corporations to dictate our food choices. And finally, that lack of sleep is not a badge of honour.
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?
Honestly, I didn’t have time for grief. I fell over, within two weeks I was walking with a walking stick. Two weeks after that I had fallen again and had optic neuritis (where my vision became compromised and I had to wear an eye patch over one eye).
So, six weeks after I fell, I had an MRI which confirmed MS, then was admitted to hospital for IV steroids where they performed a lumbar puncture to doubly confirm my diagnosis. As a result of the lumbar puncture I was in bed for a week with a migraine for five days where I couldn’t even stand up. I had to close the store during that time.
The next week I was back at work and had to hire staff so I could go to rehab to learn how to walk again. I’m so grateful it only took six weeks to get my diagnosis. Looking back, I have had various symptoms of MS for about 10 years. All of them are brought on by stress or during the aftermath of it.
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 went to one MS peer support meeting. When I got to the meeting I was handed two things – Overcoming Multiple Sclerosis by George Jelinek and a will kit. Yep, a will kit. It spoke volumes of what was to come.
Firstly, the meeting was at 11am on a Tuesday. Not many people can get to a meeting at 11am on a Tuesday. All of the attendees had been diagnosed for 10 years or longer and I hobbled in on my walking stick full of ideas about how I would beat the disease. I even had a disagreement with a representative from the MS society who told me that food and lifestyle have no bearing on the disease. Needless to say, it wasn’t a positive experience and I didn’t go back.
What would you say to your younger self?
Quit smoking that first time you tried. That loving someone and being loved in return is a privilege, a broken heart does not define you. Forgive people. Speak up when feel you need to, you have a voice. Use it.
How have you changed, if at all, in your relationships, decisions and what you value?
I try to look at the bigger picture with everything these days. Some days I’m good at it, others I’m not. The small stuff is so inconsequential, although we tend to forget that when we’re in the middle of catastrophising. And I think I may be the one of the world’s best catastrophisers!
I think I am a better person now, with my life experiences. I feel I’m more aware about the fragilities of life so I’m able to offer a unique perspective on things. I have a lot more empathy for people and I really try to help when I can.
I value friendships even more these days, it might be an over 40 or a chronic diagnosis thing but my friends and family are incredibly important to me. I really don’t know what I would do without them. Even living in a different state to a lot of them hasn’t changed our friendships too much. I’m so grateful for technology.
Lastly, I am a lot more grateful these days. Gratitude is so important. It allows you to be present, it’s so simple and its free!
What advice do you have for others?
Being diagnosed with a chronic illness is not the end of your life. It may just be the start of a beautiful new chapter.
Learn as much as you can about your diagnosis, ask a million questions of anyone who is treating you. You really need to educate yourself about what you are dealing with. Read books, listen to podcasts and attend courses. Educating yourself about your chronic means you are in control of your treatment and this is very important. You are your best advocate.
It takes time for you to get back to some semblance of good health. It took me three years. Remember it took your lifetime for you to become sick, so please don’t expect to reverse it within weeks or months. I have tried so many therapies and have been to three different neurologists to find the one who works for me. You don’t have to accept your first caregiver, ask your networks or go online to get recommendations from other people who have the same chronic as you. There are people who specialise in what you have. Not every medical person knows everything about every disease. Find your team of people, keep it small but use them as your support when you’re not feeling great.
What is your life philosophy and has this changed?
I look back on my life pre-diagnosis and believe I was more of a spectator in life, now I live it more. I tick things off my bucket list because when you’re diagnosed with a chronic illness you realise that you’re no longer immortal. Your mortality slaps you in the face.
I have wanted to travel to Europe for 20 years, this year I finally made it happen. Now I find if I start a sentence with ‘I’ve never done….’, if I really want to do it then I try my hardest to make it happen.
Are you on any treatments?
I am on Tysabri, which is an infusion every four weeks. I have to go to hospital and it takes around two hours for each treatment. The first eight months were tough, I suffered from a lot of side effects but it is halting progression of the disease. I’m great now, it’s taken me three years to get it all under control. It took nearly 18 months from my diagnosis to start taking medications but, after a number of MRI’s that showed 10+ new lesions every six months, I had to start taking medication to slow the progress of the disease. I am really grateful that I did.
I also have two kinesiologists and a chiropractor who I could not live without. I also went to therapy before and after diagnosis. It took me a while to work out which supplements I should take. Currently I take the following: Vitamin D, probiotics, iron supplements, InflaMood (saffron and turmeric), magnesium, melatonin and some Ayurvedic herbs. I try to get to Bali once a year to do an Ayurvedic cleanse called Panchakarma.
I also practise Yin Yoga, meditate and walk when I have time. I’d like to up my exercise level in the new year. My goal for 2018 is to get better with my ‘non-negotiables’ – the things that I have to do every day to maintain my health. Unfortunately, when I get stressed these are the first things I stop. So, my goal is for them to be part of my non-negotiable daily routine and my go-to when life becomes challenging.
What is a ‘bad day’ for you?
Headaches and fatigue get me. I’ll be going along fine then I hit ‘the tired wall’ as I call it. I can’t get much done after I hit the wall. After high stress periods I also get hit with vertigo. It used to last six to eight weeks. I have now hacked it so I can usually get rid of it between one to two weeks.
What do you do on a ‘bad day’?
Be nice to myself and not expect much output on those days. I may go into work for a few hours but will then go home and chill with some Netflix. If everything is all-consuming, I’ll go to a movie. Sitting in the dark, not being able to be contacted and being immersed in someone else’s world usually does wonders for breaking the loop of stress in my head.
I also reach out to my friends and family for a vent and try to get it off my chest. Or I call a friend and ask them to make me laugh, sometimes you just need a good laugh.
How do you deal with stress?
This one is a work in progress for me. When I’m stressed I tend to stop all of the good things I do such as eating well, exercise and meditation. These should be my go-to when I’m stressed. I also need to learn to let things go a lot easier. I’ve experimented with journaling – it hasn’t stuck so far but I’m going to try to be better at all of these in the new year.
Like most people, I know what I should be doing but I can get so caught up in the hamster wheel that I forget to be kind to myself.
Who are your back up dancers?
There are so many! Medically – my chiropractor Liz, my kinesiologists Amanda and Damian, my neurologist Dr Kilpatrick and his wonderful practice manager, Lynn. My work support – my wonderful team Laura and Abbie. My friends – Petrina, Amanda J, Nicola, Deb, Monica, my brother Joel, Kris, Michelle, Amanda E, Amanda C, Phil, Lowry, Stephen and my gusband George. And most important is my dog, Fergus. I had no idea how much joy and love he would bring into my life 3 1/2 years ago.
Best bits of being A Chronic Entrepreneur?
Building and creating something from nothing. Some days I have to stop and realise how far I’ve come and acknowledge it. And proving the naysayers wrong.
Worst bits of being A Chronic Entrepreneur?
Stress. There can be periods of high stress and this can have a huge toll on my health and wellbeing. Doing this on my own has been tough at times.
Are you a 5-year planner or are you winging it?
I’m definitely a planner, not as far ahead as five years though. I plan by the month with some longer-term goals thrown in as well.
Dream weekend plans and have these changed?
At the moment, my dream is to get on a plane, land near a resort, arrive at the resort, sit and read multiple books for five days with the hardest decision in front of me being what to eat or drink.
Ultimate dinner party guests?
Brené Brown, Chase Jarvis, Marie Forleo, Tim Ferris, Rachel Zoe and Oprah.
What next?
The launch of this blog. I am beyond excited to be able to tell everyone’s stories and to change the dialogue around chronic illness. I’d also like to move into coaching people with chronic illness. I have so much knowledge around it and I’d like to share it if it will make someone’s life that little bit easier.
Let us know what you think below and share your story with us on Instagram tagging @achronicentrepreneur and using the hashtag #achronicentrepreneur.
