A Chronic Entrepreneur: Zoe Simmons
Zoe Simmons has been searching for a proper diagnosis for years. After an incredibly extensive period of uncertainty, she finally has some answers. But her diagnosis journey is not over - and she is still investigating other possible chronic conditions, which cause her consistent pain and fatigue. Despite this, Zoe is a successful journalist; SEO copywriter; editor and author. First published at only 16 years of age, Zoe has written for numerous well known publications including Daily Mail, news.com.au, Kidspot, Popsugar Australia, Herald Sun, and the Daily Telegraph, among others. She’s even writing a book on her town’s survival in the Black Summer Bushfires! Read on to learn more about Zoe’s inspiring story.
What’s your Chronic?
After years and years of searching and begging doctors for answers, I was recently diagnosed with fibromyalgia. I’m also currently being investigated for adenomyosis—but getting a diagnosis is very difficult. I thought it might be endometriosis, but I’ve had three surgeries, and countless scans and tests—so possibly not, unless they’ve missed it (which is quite common).
My conditions cause wide-spread body pain and aches. I’m always so sore and stiff. It literally feels like I’ve either been run over by a truck, or kicked in the back by a very large horse.
I also experience severe pelvic and abdominal pain. It feels like acid, burning its way through me—or like someone’s shot me, and the white-hot shrapnel burns throughout my abdomen. Or like barbed wire is digging into my organs.
On top of this, I have extreme fatigue and brain fog. It’s more than being “just a little bit tired”—it’s struggling with basic functions, and even thinking. I also often experience nausea, and a lot of numbness and tingling in my hands and feet. It’s not uncommon for me to lose feeling in my leg—which is why I recently got a walking stick!
What makes you an Entrepreneur?
I actually run my own copywriting and editing business! I love helping businesses large and small find their perfect words—especially businesses that are making a positive impact on the world.
I’m also a journalist, speaker and author. I regularly write stories to make a difference in the world—whether it’s advocating for something that matters, or sharing my own lived experiences—like living with chronic pain, mental illness and more. I hope my work helps others to feel like they aren’t so alone.
I’ve had words on ethical journalism published in Kathy Divine’s book Golden Age Politics; I’ve also got a chapter about my role as a journalist in the Black Summer Bushfires coming out in a book next year
I’m currently writing my own book, too. It’s about my hometown’s survival in the 2019/2020 Black Summer Bushfires. I’m currently pitching it to some literary agents and authors—so fingers crossed they say yes!
What’s your frame of mind like at the moment? How have you survived the pandemic?
Honestly, it’s been a struggle.
Being disabled, you’re already typically often inside the home. Home is both a sanctuary and a prison--and I think lockdown has exasperated that.
I guess you also kind of feel invisible. Because with lockdowns ending, most people can go back to their normal daily lives. But when you live with pain and all the other fun symptoms that come with having a chronic illness, you can’t really do that. Chronic pain kind of is its own lockdown—except it won’t ever end.
I also have super bad anxiety, so after being in my house for so long, the outside world just seems so inaccessible. From pain, and from I guess fear.
Speaking to my psychologist, and sharing my story has really helped. I like to talk really openly about my experiences—because I know I’m not alone in them. And if I can help one person going through the same thing to feel even a little less alone, I’ve succeeded. It brings me joy, which helps me cope.
For me, it’s just about focusing on the things I can control, and being grateful for everything I do have—like a roof over my head, my friends and loved ones, and my body that fights its hardest to keep on living, even in so much pain. I’ve also been focusing more on my self-care, like making sure I drink enough water and eating vegetables, even when it’s hard. Most of all, I’m being kind to myself. And if there are some things I just can’t do, or if I’m having a particularly bad day, I just tell myself it’s okay. I’m more than my productivity. Although that is a bit of a hard pill to swallow!
I also find it helps to think of the good things that have come about as a result of the pandemic. It’s what showed me I wanted to run my own business. It’s what spurred me into looking after myself, causing me to eat better and move more. It spurred me to do hobbies I’ve been wanting to do for a long time, like paint, play piano and write music (I’m also working on an EP!). And most of all, it’s part of what spurred me into writing my book!
No matter what comes my way, I try to remember that this too shall pass—and everything will be okay.
What came first, the “chronic” or the “entrepreneur”?
Honestly, looking back, I think my chronic pain and fatigue have been affecting me for a lot longer than I initially realised—but I didn’t know it wasn’t normal, so I didn’t think there was anything to really worry about.
I think I’ve kind of been a bit of my entrepreneur my whole life though. I remember being maybe 5 years old, and starting a little business selling flowers to anyone who would walk by my house. When I was a little older, I made little cards to sell to friends. At 12, I actually started a bit of a car washing business with some of my friends. We knocked on the doors of all our neighbours, and even ended up making pamphlets!
When I started developing my chronic illness, I didn’t realise how much it impacted my life—for years. I just pushed through. But when my pain and other symptoms got worse, I longed to jump into my own business where I could be flexible and look after myself. Where I could put myself first. And that’s when I realised . . . I could do exactly that. So I did!
It started with ridiculously painful periods that were so agonising, I could barely walk. But we’re told that period pain is normal, when it isn’t. So it wasn’t until my early 20s, when I broke my wrist, that I realised my period pain was literally more painful than a broken bone.
What’s your diagnosis story? How old were you?
I’ve only really recently been diagnosed with fibromyalgia—and I’m 26. I’m still being investigated for other conditions, because fibro doesn’t explain all of what I’m experiencing. I suspect it has something to do with my reproductive system, and so do my specialists, because adenomyosis is what we’re currently looking into.
But I started experiencing pain at 13, with ridiculously painful periods that were so agonising, I could barely walk. But we’re told period pain is normal, when it isn’t, so it wasn’t until my early 20s, when I broke my wrist, that I realised my period pain was literally more painful than a broken bone.
I was 22 when I approached my doctor to discuss the possibility of endometriosis. It took a lot of begging to be taken seriously. I had to go to a lot of different doctors, and a lot of different specialists, most of whom were either really dismissive, or just plain rude.
I remember one doctor telling me my pain was caused by dairy. When I said that can’t possibly be the case (I’m vegan), she told me it was because of my weight. I can confirm it is not due to my weight, because I’ve actually lost weight—and guess what: my pain is still excruciating, possibly more so.
I ended up having three surgeries, countless scans and saw more specialists than I can count. They just kept telling me there wasn’t a reason for my pain, and there wasn’t anything they could do. I wouldn’t take that for an answer—and eventually, I found some medical professionals who actually took me seriously and began investigating.
I’m not sure how long my secondary diagnosis will take, but judging from my past experiences, I’m going to say it will probably a long time. But even without a diagnosis, my symptoms were—and are—valid.
How did the path of entrepreneurship come to you?
I’ve only recently taken the leap into full-time business ownership. I left my government communications job on 5 July 2021, although I’ve been doing freelance journalism since 2015.
While I’d dabbled in the occasional freelance copywriting project here and there, it wasn’t until mid-2018 when I undertook Kate Toon’s Recipe for SEO Success Course, and realised running my own business as a copywriter was an option.
From here, I built my copywriting business up while working four days a week in my forensic mental health government communications role. I wanted to see if I could do it, and wanted to prepare myself to take the leap.
Lockdown last year really showed me what I DON’T want to do: and that’s hustle. I didn’t want to juggle multiple jobs. I didn’t want to work long hours: I ended up burning out. I wanted to give this entrepreneur thing a go. I wanted to be gentle, and kind to myself. I wanted to back myself, and believe in myself. I wanted to kickstart my career in a way that worked for me. And I wanted to do the things that set my soul on fire in all the best ways.
So, in January 2021, I dropped down to one day a week in my day job.
And it went really, really well. I ended up officially leaving only a few months later—and here we are!
You can read an article I wrote about how I started my copywriting business here.
Did you go through any sort of 12-stages of grief with the diagnosis or take it in its stride? In other words, how did the grief process manifest itself – did you immediately reassess your life or was it more gradual?
I think it was gradual. Over the years, my symptoms have gradually gotten worse. At first, it was just extreme pain during periods--but then it spread. I was experiencing severe pain outside of periods, as well as a number of other increasing symptoms.
It wasn’t until my surgery in May 2021 that I really started to grieve. Before the surgery, I was told I had endometriosis. I was told I had a fused left ovary, and a perforating Mirena: but when I had my surgery, they couldn’t find it. It was maddening. I remember laying in the hospital crying. All I wanted was answers. It made me feel so helpless that I couldn’t find any. It made me doubt myself, and I kind of spiralled from there.
It was at this point that I realised I was disabled. I had to come to terms with experiencing these symptoms, but not having answers why. It was like a tidal wave of emotion.
I’m in my mid-20s, so I really did grieve. I grieved all I’ve lost over the past four years, and all I will lose as time goes on. I’m supposed to be living the best years of my life, but instead, I’m crippled by my experiences. It took a lot of therapy to come to terms with this, although I still struggle.
I felt angry. I felt helpless. I felt alone. I felt depressed. And I felt ridiculously guilty (I still do)—because other people have it way worse than me. But even so, that doesn’t mean what I experience isn’t valid—and it’s okay to feel however you feel. Recovery is not linear.
Even getting my fibromyalgia diagnosis had elements of both relief and grief. I think it’s okay to have mixed feelings about our experiences. And as more time goes on, I learn that even when I have my Sad Girl Days, it doesn’t mean there won’t be good days. In life, there is always joy and there is always sorrow. I think those of us with pain and chronic illness just have a bit more of a complicated relationship with existing—but there is a lot of good, too. Focusing on that light does help.
What would you say to your ‘first-diagnosed’ self, or someone else who has just been diagnosed with a chronic illness?
No matter what you’re feeling or experiencing: it’s okay.
Your life isn’t over. You can still do amazing things, and live a full, vibrant life--you just might have to do things a little differently, with a lot more rest.
You are valid, even without a diagnosis. You are NOT an imposter—not in the slightest. Please be kind to yourself.
Let yourself feel however you’re feeling. Talk to the people around you. Connect with other disabled people online—trust me, it helps a lot. We can be your online family and support network: come find us.
Don’t be afraid to speak your story. Don’t be afraid to speak up for your accessibility needs, and do things that make living even a little easier—even if others don’t understand.
And remember to celebrate the little, beautiful moments in life. Yes, chronic illness sucks. But there are positives—like being able to connect with others who experience the same thing on such a deep level, and being able to raise awareness about our experiences, and advocate, hopefully making things better for future generations.
You are a GODDAMN WARRIOR. And you are not alone.
I’ve written a few articles on the topic; I hope they help:
· I’m disabled, but here’s why I don’t think that’s a bad thing
· You can still be a leader, even when you’re in pain
· How to live a fulfilling life, even when you’re in pain
Are you on any treatments? What modalities are in your wellness team?
I’m currently on a few kinds of pain relief medication, which help me significantly. I know pain medication has a bit of a bad name, but I’m a big advocate for using pain relief when you need it: you don’t have to suffer.
I’m also currently on Zoladex, which has been helping my abdominal pain a lot.
I’d be interested to try some other treatments, but I am having trouble in finding a specialist who can help, and who is willing to help.
In the public system, I sometimes see a gynaecologist, a physio and an occupational therapist. I also get osteo, pelvic floor physio and massages when I can afford to. I’d also really like to try traditional Chinese medicine and acupuncture.
Best & worst bits of being A Chronic Entrepreneur?
The best part about being a business owner with chronic pain is the fact that I can work and manage my business in a way that works best for me. I don’t have to work 9-5, if my body doesn’t feel up to it. I can rest, and take breaks when I need. This means I’ve been able to look after myself a lot more, and make my wellbeing a priority. It also means I can do the work I want. I can work on projects where I combine my business with advocacy. I can write my book. I can create resources to help others. I can attend medical appointments as needed, without having to ask someone.
I feel like running my own business also brings me so many more opportunities! I love the excitement of the unknown. And honestly, I like the feast and famine of freelancing. It’s nice to take a break! I trust that work will always come (because it has). It’s also been great for my self-esteem, and has made me feel so valued as a writer. I feel like it’s helped show me my worth! And as someone who struggles with confidence and self-esteem, that’s been beautiful.
But the worst part is experiencing the symptoms of chronic illness. They impact your world so much, in ways people couldn’t possibly realise unless they too experience it. Sometimes, I’m so tired and in so much pain, I wonder how I can go on. I wonder how I can run a successful business. But, I just breathe, rest and listen to my body. And things seem to work out well.
Are you a 5-year planner or are you winging it?
I’m really trying to be better with planning! I do have some plans, but I’m more winging it than anything. Actually, I’d just say I’m following my gut and trusting my intuition. Although I do have a lot of goals I work towards!
I do want to get more strategic about my planning though.
I guess if I had to say, my 5-year plan probably involves doing more freelance journalism, more advocacy, building my brand and my business, and becoming an author!
What are your dream weekend plans and have these changed over the past year?
My dream weekend plans would involve me on a tropical island, laying in the sun and reading a book. I’m from the south coast of NSW, so I miss the beach terribly, especially in lockdown!
I would love to go somewhere I can relax, swim, and be pampered. Maybe a day spa of some kind! Preferably with the people I love and miss, like my mum, friends and family.
Realistically, my dream weekend plans in lockdown involve watching a lot of Netflix, some tasty snacks, cuddling with pets, bubble baths, books and walks in the sunshine. I’m pretty easily pleased!
What is a ‘bad day’ for you? How do you look after yourself on a ‘bad day’ or a day that is particularly stressful?
A bad day for me is utterly unbearable. My entire existence is pain. Everywhere hurts, including my arms, legs, neck, pelvis, back, shoulders and abdomen. My abdomen and pelvis also have additional severe pain. It often feels like acid seeping through my abdomen. Like I’ve been shot. And like I’ve been run over by a truck. And I’ll be so, so, so tired.
It gets so bad, I can’t walk. Last flare, I was crying on the bathroom floor because I couldn’t move and the pain relief wasn’t working.
Unfortunately, when the pain gets to this level, there’s not much I can do, other than rest, relax, and take painkillers. I might run a scalding hot bath with some epsom salts and lavender oil. I might use a heat pack, or drink some anti-inflammation tea. Usually, I’ll try to do sensory things that make me feel better, like wear super comfy pyjamas, fluffy bed socks, and cuddle up with my cat and a blanket. Lighting candles, watching movies and comfort eating also help, although often the pain is too severe for me to eat.
I just try and be gentle to my body, and listen to what it needs--and wait for the pain to hopefully pass or ease. I also try to distract myself, often with music, movies or gaming.
Who are your back up dancers? (this questions means who are the people who support you)
My family and friends are amazing. They’ve been understanding, and help me when I need it (e.g. driving me somewhere, so I can take pain relief if I need to). They’re also a great shoulder to cry on when everything just feels a bit too overwhelming. My boyfriend is incredible. My mum is also really understanding and loving. She reminds me to clear my plate and focus on my wellbeing when I need to.
BUT I’d also like to mention the disability community. I’ve connected with so many wonderful people online who have similar experiences to me. After I couldn’t find a diagnosis, I felt so distraught and lost. My friends in the disability community found me. They helped me to work through my grief, my medical trauma and made me feel comfortable in my identity as a disabled person. I may not have met any of these people, but I love them deeply. I’m so grateful I found them.
What have you learnt about yourself through this journey? How have you changed, if at all in your relationships, decisions, what you value/your life philosophy?
I’ve learnt that I’m stronger than I thought—so much stronger. While I do struggle to think kindly about myself, I think people who live with pain and illness are absolute and utter badasses—so I try to remind myself that I’m a badass too.
My life has definitely changed as a result of this journey. I have to lean on the people around me a little more, especially for physical and practical things like grocery shopping, cleaning my house and even movement. I’ve started using mobility aids, which was a HUGE mental battle, but it does make my life easier.
It’s also shown me how much is wrong with our healthcare system—and how we treat disabled people through the lens of the medical model of disability. It really makes me want to fight to make a difference—to make things better for future generations. I think when you’re forced to advocate for yourself all the time, you become a lot stronger, and better at fighting for what you need. It also means I can help my friends advocate for themselves, too.
I also have a lower tolerance to things that just simply don’t matter. I have a limited amount of energy, and I want to put that energy towards things that make a genuine difference in the world. I find I’m a lot better at saying no and sticking up for myself, too. I’ve found that I put more importance on my wellbeing than my finances. Life is short. I don’t know how my symptoms will affect me in the future, so I make the most of what I’ve got today.
It’s also made me focus more on the positive things in my life. Yes, I’m in pain: but the feeling of the sun kissing my skin is still beautiful. Or the sound of tweeting birds. The smell of fresh, ocean-scented air. There’s so much beauty in the world. I think being in pain helps me focus on that more.
Kindness has always been important, but I find myself being more understanding and more compassionate. Everyone is fighting their own battle: you just might not be able to see it. That’s why it’s vital to always be kind, and treat people how you’d want to be treated. Because of my experiences, I’m also a lot more in tune to the needs of others, particularly in terms of accessibility.
Who are your ultimate dinner party guests, (dead or alive), and who would you seat on either side of you?
Ahhhhh, this is a tricky one!!!! Well, firstly, I’d love my professional role models, including authors like Richelle Mead, Tara Moss and Carly Findlay (Tara and Carly are also disability advocates!). I’d also invite everyone I’m missing during lockdown, as well as my dad and pop who are sadly no longer with us.
I’d also love to invite Frida Kahlo, Malala Yousefzai, Clementine Ford and Simone de Beauvoir, as well as musicians like Amy Lee and Lzzie Hale.
Apparently, just a bunch of really strong and awesome women!
I’d have to pick my loved ones to sit either side of me, though. I miss them dearly.
What are you looking forward to in the next 6 months-1 year?
I am crossing my fingers and toes I can get a literary agent or publisher interested in my book. I know it’s competitive, but I have faith in myself that I can do this!
I do also have a chapter in a book being published next year, so that will be really exciting to be able to hold it in my hands!
I feel like there’s a lot of good to look forward to though. I feel like my career is taking off. I’m doing more speaking gigs, I’m being interviewed, and I have a lot of exciting projects coming my way.
I’m also looking forward to being able to swim at the beach again.
Where can people support you online?
I have my website: https://zoesimmons.com.au/
Twitter: https://twitter.com/itbeginswithz?lang=en
Facebook: https://www.facebook.com/ZoeSimmonsJournalist/
Instagram: https://www.instagram.com/somethingbeginningwithz/?hl=en
