My pain story:
I was born with life-threatening necrotising enterocolitis (NEC) and have never lived a healthy or pain/discomfort free day in my entire life. However, as I grew and developed, I realised that the pain was not normal and it became hard to ignore by the age of about 8. I had significant back pain and joint pain but despite seeking help and support, it wasn’t until about 14 when someone did something, Throughout those difficult years as a young child, I was repeatedly being told it was 1) probably just growing pains 2) 'lady issues' and normal period pain, then 3) after puberty, it was likely psychosomatic (aka all in my head or caused by depression or anxiety) – it turns out I had a herniated spinal disc, spinal cord compression and other spinal pathology. That was the real beginning of my chronic pain journey.
Not being believed or taken seriously is, unfortunately, a very common theme for many people living with chronic pain, especially young females. Another example is related to my autonomic blood pressure disorder called Postural Orthostatic Tachycardia (aka POTS). From about 12, I was regularly experiencing chest pain, shortness of breath, heart palpitations, dizziness and had fainting spells on the regular. Numerous times when I visited cardiologists, I was told it was just anxiety because I was a teenager. Eventually after many, many years of feeling this way and fainting at school, work and out with friends, at age 19, I discovered that I had to get a (thankfully) Stage 2 thymoma tumour the size of a baseball (~15cm) removed from behind my sternum. Unfortunately, despite having a successful thymectomy without the need for radiation therapy over a decade ago, I still experience the impact and pain of it. to this day, It has resulted in complete numbness of my right torso and extreme tenderness from the surgical site where my lung was deflated it. As for my POTS, it was not diagnosed until 2015 due to a chance encounter with a rural cardiologist who was somewhat familiar with the condition.
Over the years as I got older, I learned about the importance of self-advocacy and about my rights as a person with multiple complex chronic illnesses and disabilities. It also helped that I studied within the health care industry (Bachelor of Human Nutrition (ext Nutrition & Dietetics) at university and then went on to obtain Postgraduate qualifications in Chronic Conditions Management. My insight as a health professional has helped me further navigate the system from a differing perspective and learn how to always ask questions and stand up for myself, especially in situations of stigma and discrimination. However, sometimes despite my efforts and strengths as a confident self-advocate and well-informed patient, I have still been in numerous situations of disappointment or despair. Often occurring when health professionals have not provided me with the support I needed or treated me with dignity and respect all people deserve. Knowing and having experienced this has made me so frustrated thinking about all those like me who may be suffering but not have all the necessary skills and tools to fight for their wellbeing, quality of life and adequate care. This has fuelled my deep passion to advocate for and bring awareness to the challenges of living with chronic pain and disabilities (especially invisible ones) for all people, but specifically young people, women and people of colour.
Other than my 'relatively straightforward' (meaning easy enough to see in a scan or to explain) diagnoses of spinal disc herniation, spinal stenosis (causing sciatica, meralgia paresthetica), bilateral carpal tunnel, TMJ, migraines, osteoarthritis, thymoma and infant NEC (and many associated issues requiring repeat surgeries), my other conditions were very difficult to get a diagnosis for. It is because some of them didn’t necessarily have a pathology that was 'cut and dry'. Therefore, receiving additional diagnoses like Ehlers Danlos syndrome (hEDS). POTS, mast cell activation disorder (MCAD), chronic fatigue syndrome (aka myalgic encephalomyelitis), fibromyalgia, hypersomnia and vulvodynia/Interstitial cystitis were all very difficult (some of which took almost 2 decades) due to their complex and uncommon/unknown nature. My diagnosis of EDS, which is a connective tissue disorder due to faulty collagen (the glue that holds your body together) was the most difficult to get and unfortunately that is very common. The global Ehlers Danlos Society states that on average it takes people about 2 decades to get any sort of diagnosis and therefore, even longer to get the proper supports, therapies and lifestyle intervention to improve quality of life and/or avoid injury and disability. EDS explains a majority of my widespread joint pain, joint dislocations or partial dislocations (subluxations), weakness, and crippling chronic fatigue. And is very likely associated with my initial spinal issues and complex digestive gastroenterological pain.
Some doctors may say getting a diagnosis isn't necessary because the way they will treat you is the same. However, knowing what is happening to you and your body is your right. And having a diagnosis and some answers is not only important for your own records, your own research and further understanding (and therefore empowerment) but for validation and acceptance. Not only this, but they are likely only treating your symptoms rather than the condition and without knowing what it is, you can't properly get the specific treatment or recommendations for it. Knowing a diagnosis will also ensure you are prepared and can make lifestyle adjustments to better manage injuries or progression.
Spinal injury and Trauma:
Unfortunately, my chronic pain story isn't just related to bouts of challenging conditions with my health and biology but had a big part to due with violence, especially various traumatic experiences and intimate-partner violence which further damaged and exacerbated my spinal health and it's damage. To learn more about my story as a survivor, Gender Equality and Prevention of Violence Against Women (particularly women with disabilities) advocate visit; Our Site - a created by and for women, girls (aged 15 years and above), feminine identifying and non-binary people with disability. Initially, I didn't think to link (and thus share) these two parts of my identity and journey together but I realised that everything that has happened to me is not my fault and sharing my story, both as a person living with chronic pain and as a survivor of violence is a part of the strength of what I have endured to get where I am today and that is nothing to be ashamed of.
Managing and dealing with chronic pain:
Managing my pain is difficult. While I am always in pain, every minute of every day, the severity and how it affects me changes daily or sometimes even hourly. Each day is like waking up on roulette of pain and wondering how my body (and at times, subsequent mental health) is going to cope. Most days are just okay. Some days are horrific. Some days are unbearable and occasionally, some days are ‘good’. That being said, it is likely that my ‘good’ days are most people’s bad days.
I’ve learned to live with pain; I’ve learned to accept that this debilitating erosion of who I am (or at least who I could’ve been) is and will likely be a part of my life forever. Living with chronic pain and illnesses usually means I need a lot more rest to make up for a 'productive day', tasks or activity like dinner with friends. It's always a delicate balance of planning and preparing for how my body will deal with each day. It's like being in a constant energy deficit while always hurting no matter way. Sometimes in the chronic illness community, this would be described as "not having enough Spoons" which is based on the Spoon Theory.
Some days, I cope okay. Other days, I am full of despair and want to give up. Overall though, I am chugging along as best I can and doing as much I can to help make a difference to those who are suffering like me.
I think the best way to manage chronic pain and disability, is by ensuring your lifestyle and environments are adjusted to meet your needs. It’s about advocating for yourself and your care. It’s about discussing the impracticalities to your health care providers if what they are recommending is not suitable or practical (especially in the public health system with long wait times and many hoops to jump through). This includes requesting reasonable workplace or study adjustments and having treatment plans in place.
Successful management of my pain has a lot to do with the acceptance of my limitations, the life I thought I was going to have and the person I thought I was going to be. It's important to note that this is not a bad thing, just a new normal and shift in perspective. It’s meant acknowledging and accepting that I physically can’t manage a full-time workload (I stopped working full time almost 5 years ago), will never be restful, wake up refreshed or be pain-free. That’s not saying that I cannot be happy and have a fulfilling life, it’s just accepting that my definition of success, productivity and ‘fulfilling life’ has changed.
What my life is like nowadays:
I do my best to do what I can when I can, understanding my body is tired and traumatised. I try not to over-commit (sometimes, still very difficult!) and I do my best not to overexert myself. I manage my pain and health through lifestyle changes and activities like ensuring my workstation is ergonomic and accessible for my needs, regularly stretching, using heat therapy, TENS (transcutaneous electrical nerve stimulation) therapy, regularly exercising and eating well. In addition to a variety of supports and treatments ranging from multiple different types of medical specialists, seeing my GP tri-weekly, and receiving regular health care such as myotherapy, dry needling, osteopathy, occupational therapy and using pain relief medications such as anti-inflammatories and opiates.
Other interventions to help keep my pain manageable include epidurals, nerve blocks, ketamine infusions and some upcoming additional surgical interventions for my spinal stenosis/disc degeneration (currently causing spinal/nerve compression). And of course, I have a psychologist and am most definitely not adverse to seeking other mental health supports because living with debilitating chronic pain (which multiple doctors have informed me, will likely never go away) is extremely complex and definitely has an impact on mental health and wellbeing.
My focus in life now is to be happy and focus on the things that matter to me and make me happy. I truly believe people with disabilities and chronic illness (including pain), can and should be able to have fulfilling lives (which obviously is made much more possible with correct supports in place). This for me, means travelling and seeing the world, spending time with loved ones and surrounding myself with dogs! I have two miniature longhairs rescue dachshunds named Ponyo and Jojo.
What I want people without pain to know:
Pain is complex, chronic pain is complex and everyone’s situation is different. Coping with and acceptance of living with pain is not something anyone ever should have to experience. Yet, millions of Australians do. Pain and chronic pain is a spectrum and impact people all differently. My experience with chronic illness, pain and disability is my lifetimes’ worth of agony, heartbreak, tears, self-advocacy and inner strength to get here – it is not an easy road and you never know who might be suffering. Every person's experience of pain is their own. Pain is pain and everyone's pain is valid.
Just because chronic pain is invisible, it does not mean the person suffering should be. Everyone with chronic pain just wants a chance to have a quality of life and an ability to live their life to the fullest. They should all have every opportunity to, which is why having appropriate services, funding, supports and research for the millions of Australians living with chronic pain is so important.
What I want regulatory change-makers to know (as someone with personal lived experience of chronic pain and disability, as well as the CPA Executive Director).
Making access to some medications more difficult and (subsequently access to) health professionals willing to help, will not aid those living with chronic pain but will further the challenges they face to receiving adequate treatment and care. If changes are to be made to reduce opiate-related harm (many of which are related to opiate misuse), there should be increased support services for people in pain and better access to these supports in place. This includes increasing access to multidisciplinary chronic pain care, mental health support, more and easier to access chronic pain management programs, easier access to alternative pain reliefs and support services that do not have waiting times averaging 12-18 months, for those that do not have the financial ability to pay for private care.
There also needs to be more funding and resources to support GPs to feel confident in managing the care of their patients and improved funding in community programs for people in pain. I speak from personal experience (as a health and university qualified professional who knows very well what my rights are) yet despite this, I was turned away by more than half a dozen GPs who refused to treat me in fear of being viewed punitively as an opiate prescriber or were simply uncomfortable with dealing with my complex chronic pain issues. The same thing happened when I was searching for a psychologist.
It took me almost 8 months before I found a GP who genuinely believed in me and was willing to take me on as a patient. And it took me almost a year to find a somewhat suitable and willing psychologist. This is not on.
Patients should not be turned away because practitioners are not supported or confident enough to help them. And practitioners who want to and can help should not feel uncomfortable or that they will be scrutinised if they do.