Chronic pain changes your life, in all most every way imaginable. And unfortunately as a result, our careers often take a hit.
Because when you’re in constant, debilitating pain, there’s suddenly so much you can’t do. And if you live with fatigue or other pesky symptoms, a career becomes so much harder.
Many people who live with chronic pain end up needing to give up certain careers, particularly those that are physically demanding. It’s part of the reason why a lot of us end up freelancing, or running our own businesses: it gives us the space to work, and the space to genuinely take care of our needs–something we don’t often get in the standard 9 – 5 job.
As someone who’s been living with chronic pain for the past four years, and someone who’s jumped into their business to better take care of themselves, I wanted to celebrate other chronic pain warriors doing incredible things in the business and freelancing world.
I wanted to promote them, and share their words of wisdom with the world. And since September is Pain Awareness Month, I couldn’t think of a better time to write this feature.
Hear our stories, in our own words, and learn how pain impacts our lives–and how you can be a better ally.
Sophie Lucas, mental health advocate, peer educator and facilitator
I talk about my lived experience of mental illness, chronic illness and I also live with chronic pain. I mainly talk about mental illness, in the hopes to make it a more common topic to talk about and to continue decreasing the stigma surrounding complex mental health.
I grow kidney stones, and get kidney infections. Both cause me pain. I can sometimes go months without pain, but I get frequent pain, especially with UTIs. I also have a permanent injury and chronic pain, from being in a car accident in 2007. I received surgery for an injury I sustained in the accident, and the surgery didn’t work, leading to a diagnosis of nerve damage, a permanent injury and chronic pain.
You can follow Sophie on Instagram for more.
I write blog posts about my experiences with disability and chronic illness.
My experiences with chronic illness have greatly impacted my life and career, though this is something that I only started coming to terms with in the past year, largely through my writing. I have Quadriplegic Cerebral Palsy, which not only limits my mobility but also means that other people don’t generally expect me to succeed independently. I have pretty consistent pain and stiffness in my legs, as well as back pain due to scoliosis. I had surgery on my hip when I was fifteen, which still causes difficulty now, particularly in cold weather conditions.
Alongside this, I also have severe Ulcerative Colitis, as diagnosed in my final year at university. This causes a lot of stomachache and fatigue, amongst other things. The combination of these two things can affect the quality of my life a lot, especially socially. I remember a time before the pandemic properly hit, when my friend had a birthday party and I began experiencing a flare, so couldn’t go. Then, the next day, I felt well enough to spend some time with my nan. I avoided eating anything, of course, but we ended up bumping into my friend. The whole interaction was so awkward and I felt horribly uncomfortable. It’s so difficult to explain how these things can fluctuate without any basis for understanding.
Try to make peace with your own boundaries and allow yourself to believe that you are whole, even on bad days. Sleep when you need to. Take painkillers when you need to. Say no to things when you need to. These are all valid choices and I’m proud of you for making them. Also don’t be afraid to fight your doctors. You are worth it, in a very cliché kind of way.
That there is so much more to being “healthy” than what we can see on the surface. Chronic pain exists and it’s not fun for anyone experiencing it. We can find it so easy to feel like we are inconveniencing people around us, be a better ally by educating yourself on the conditions of your chronically ill friends and understanding that we can’t always make space to reply to messages immediately. We are always thinking about you, though.
As a result of having Cerebral Palsy, I live with near-constant chronic pain. It impacts my ability to focus/concentrate, my ability to tolerate sitting upright, and my ability to use a laptop for long periods of time. It creates tightness in pretty much all my muscles which means I am always somewhere on a sliding scale of discomfort.
Listen to your body when it’s telling you it needs to take a break. Rest. Hydrate. Eat well. Come to terms with the fact that there’s going to be things you have to say no to, or otherwise miss out on, if you’re going to listen to your body.
I wish they knew that no one fakes or exaggerates chronic pain, that it can be truly and deeply debilitating, and that just because you can do something one day, doesn’t mean you will always be up to it. A person’s best can look different every day. Be better allies by believing people when they express pain, especially women. Accomodate flexible working hours, remote working and be willing to adjust what you expect of a person based on how capable they’re feeling, something which you can only really do with an open dialogue.
Kristy Moore, owner and travel agent at Travel Moore
Can you please tell me a little bit about your business and what you do?
I own a travel agency: Travel Moore. I specialise in accessible travel and I’m Australia’s only certified autism travel professional.
Chronic pain has been a part of my life for over 20 years and I still suffer daily, but I can now manage, and have learnt when I need to take a break and rest. I don’t remember what it’s like to not be in constant pain or what feeling normal feels like, as my normal is having some sort of pain daily.
Chronic pain has had me lose work/ jobs and that’s one of the reasons I left the workforce and commenced my own business, as being my own boss allows me to take the time I need. It also allows me the flexibility to visit the doctors and see my specialist, and I can take time off when needed, like if I’m having a really bad day or if I need rest because the medication is not working or has made me too groggy to function. I recently won an award for my business, and was recognised for running a business while living with chronic health issues.
Don’t push your self and learn what’s works for you, as what works for me and gives me pain relief might not work for you. Know that you’re not a druggie and if you need strong pain relief to get you though, that’s ok. You don’t have to say no because of what others might think of you. Don’t be afraid to try new medications or treatments. You can build up a intolerance to medication and it may stop working or doing what’s required.
I write and perform plays that explore the intersection of disability and queerness, autonomy, and joy. I have toured my work to Sydney, Melbourne, and regional South Australia. As a disability advocate, I use social media to raise awareness, educate, and advocate for increased inclusion of disabled people, particularly in the arts.
I have endometriosis and osteoarthritis, and I have lived with chronic pain since May 2017. It was immensely difficult to get through acting school with undiagnosed pain that often left me unable to walk or stand. I am not able to work as productively or frequently as is expected of us in capitalism. Theatre and screen both often have extremely long days which is a huge toll on my body. The toll of working often means I cannot socialise or do my hobbies, I’m so exhausted or in so much pain that all I can do is rest in bed. I have so many plays and projects I want to do, but I don’t have the energy that nondisabled people have to achieve it all. I need a lot of support from friends, family, and colleagues, and frequently miss out on opportunities that I’m not well enough to pursue. Chronic pain and my disabilities mean I am uniquely qualified to play disabled characters, and I advocate for more disabled characters and actors to be included on stage and screen. I have developed new ways of working and making art to manage my pain, and to improve how everyone makes art together.
Accept that your life may not look like you want it to, or how you envisioned it. This sucks and make time to mourn it, but keep expecting that your limits can impact your work life and social life. Let go of other people’s standards of productivity.
It is traumatising to be in pain. Even though it happens every day for years, decades, it can still be surprising, frustrating, and unexpected. Pain impacts your ability to think, and can be extremely exhausting. I don’t take painkillers to achieve a pain-free state. I take painkillers to be in less pain. Many doctors don’t know how to manage your chronic pain. People in pain have to fight for pain relief and support.
Vanessa Smith, writer and systems support
Can you please tell me a little bit about your business and what you do?
Systems support (like project manager/online business manager) for neurodiverse/chronic people who run a business.
Can you please tell me a little bit about your experiences with chronic pain? How has it impacted your life and your career?
I’ve had chronic *stuff* off and on my whole life that has mostly been treated like acute incidents. Then around the same time COVID-19 hit, I hurt my back lifting a second-hand washing machine into the boot of my car. It has never gotten better.
Get a doctor who believes your pain is real.
What do you wish the world knew about chronic pain? How can people be better allies?
I’m a freelance content creator for small to medium-sized businesses who need help building their brand and enhancing their SEO. I write SEO-positive blogs and occasionally offer advice or guidance for content strategy.
My pain originally started as an ergonomic or posture thing (sore back or shoulders) which I was able to mostly rectify by changing my set-up. My more chronic pain started in my hands and in particular my knuckles which is troublesome when your work is to type lots of words daily. I didn’t have this pain during my time working for other people it’s only started this year and I am full-time freelance. However, it does impact my ability to be as productive as I would like: if my hands get to painful I can’t type. I can switch to voice to type and have a microphone to assist with that setup, but part of my work is editing which I can’t do without typing. I have so far just pushed through and worked through my pain for the most part just taking more regular breaks than previously.
I have been diagnosed with early-onset Rheumatoid Arthritis, and what this means is that I have the genetic markers (and family history to back it up). I have the pain but I don’t have a physical inflammatory response that triggers a full diagnosis and therefore some hardcore immunosuppressant medication. I may never develop past my current pain but it may also develop further, currently the pain is mainly in my hands or fingers and toes which I manage through compression gloves and socks, anti-inflammatory pain killers, regular pain killers and healthy diet (or I try to).
Seek medical advice as soon as new chronic pain begins, I wish I had have gotten my hand pain checked out sooner but I waited and self-medicated or self-managed with pain killers, pain creams (Voltaren gel etc) and kinesiology tape. These things did help the pain subside but if I had have gone to the doctor sooner, I would have had more tools to help manage the pain and also a better idea of the cause. Seek out others going through it as well, support groups online or just others who share their pain struggles. Knowing you’re not alone will help your mental health and when you’re also struggling with your physical health. Be kind to yourself. This is probably the most important. You may struggle to get answers for months, years or you may never know. Pain isn’t something that can be seen, so it is trickier to find the final answer, but persist and continually search for answers. Throughout it all, be kind to yourself. You’re doing the best you can and your best isn’t going to look like someone else’s.
What do you wish the world knew about chronic pain? How can people be better allies?
Unless you’re specifically asked for advice by any person with a chronic illness don’t offer it. We’ve probably either already heard it or have tried it, we understand you may be trying to help but if we’re talking about our illness or pain with you it’s because we trust you and it’s probably really bad. We don’t need advice: just a supportive ear.
No matter how we look on the outside we’re likely struggling with something, whether it be pain or fatigue, so bear with us if we’re interacting with you. We’ve chosen to expend what little energy we often have on this interaction…respect it and don’t push us to move or act like others who don’t suffer an invisible illness.
Be kind and don’t dismiss what we say about our illness. We’re likely to only share about 5% of how we’re actually feeling with other people because we’re often dismissed. If you’re welcoming and understanding, we’re more likely to share more with you.
Melanie Foulkes, counsellor
I’m a counsellor who provides online therapy specialising in anxiety, depression, burnout, disability and chronic illness. Because I have lived experience in all my specialty areas, I can empathise and understand in ways that others can not. It is my goal to make counselling as accessible as possible.
I have experienced chronic pain since childhood. However, my pain worsened when I became chronically ill three years ago. Over time as my illness has progressed, my pain has increased to the point that I had to quit my part-time job. At the time, I could no longer physically do the job, which meant I had to find other work. Fast forward, I have my own business where I work from home and can adjust my schedule to rest as much as I can to get through particularly tough days. I recently blocked out my whole calendar for a week because I needed to. It felt good knowing that my leave was immediately approved by my manager (me) without any need for explanation or guilt.
Extend to yourself compassion, especially when your pain has increased. I try to speak to myself in the same way that a good friend or parent would. This does not take the pain away, but it reminds me that what I’m experiencing is valid. I wouldn’t dismiss my friend’s pain, so I won’t dismiss my own.
If you know a friend or family member has chronic pain, try to listen rather than offering advice. It can be challenging to do at first, but it will become easier over time. Sometimes all I need is someone to listen and empathise with my experiences.
My own experiences with chronic pain as a business owner–and my tips for coping
Four years ago, I broke my wrist–and it was then that I realised my period pain was actually more painful and a broken bone. It began with incredibly painful cramps, which began to appear outside of my periods, and eventually, a whole host of other symptoms like fatigue and brain fog decided to join the party.
It’s gotten worse over the years. I went from a high-achiever working full-time to someone who struggled to even walk sometimes when the pain is too bad. It resulted in me leaving my government communications job, so I could better manage my care and career goals. Running a business has been a godsend for me. It means I can rest when I need to, and genuinely take care of myself. Although, I am often in too much pain to write, which sucks when you’re a copywriter, journalist and editor. Even so, it’s allowed me to kick a lot of goals I don’t think I could have if I’d never made the leap to self-employment.
My advice for people living with chronic pain
Please know your pain is real. Even if you don’t have a diagnosis. Even if you have to battle with the medical community for answers. You, and your experiences, are valid. Keep fighting. If one doctor won’t listen, find another.
I’ve also found it helps a lot to connect with others experiencing similar things. I’ve found many friendships and connections online through chronic pain groups, and the wonderful disability community. It helps to know you’re not alone.
And don’t judge yourself by anyone else’s standards. Listen to your body. You know it better than anyone else. Treat yourself with love and kindness: and remember it’s okay to feel however you’re feeling. T
What I wish the world knew about chronic pain, and how you can be a better ally
I wish people understood how much it impacts your life. Even small things can be utterly exhausting for us, and some days, we literally can’t do anything. Please be kind to us. We can’t help that we are in pain. We don’t need your judgement: we need your support. It’s okay if you don’t entirely understand: just listen, and be there for us. If it frustrates you, it’s probably frustrating us more.
Chronic pain isn’t something we can switch off. Often, it’s permanent. And there’s a lot of emotions and grief that goes along with that realisation. When we’re in pain, we do need to do things differently, and there’s a lot of things we just can’t do. Accept that, and keep listening to–and sharing–our voices.
Thank you for taking the time to read our stories <3
Are you a business owner or freelancer with chronic pain? Feel free to post a promo of yourself or share your top tips in the comments!