Chronic Pain does not discriminate. It can affect people of any age, gender, or cultural background. Society does not always accept or understand this. It is a commonly held belief that people with chronic conditions should look sick, that they are usually old or physically impaired, or that they are unable to work or function. Yes, this can be the case, but it is not always. Those who have chronic pain have good days where they do not experience any symptoms and they are able to contribute successfully to their community. For some sufferers, they just do not look sick at all. Currently, 3.24 million people in Australia experience chronic pain, and I am one of these people.
My conditions are not visible so although I look healthy each day, I am often experiencing chronic and acute pain and other unfortunate side effects.
For those who have never experienced chronic pain or who may not understand it; imagine bumping your elbow or waking up with a toothache or rolling your ankle, and instead of that pain only lasting 10 minutes or going away with the help of paracetamol, the pain stays with you like an annoying shadow. On the good days it is bearable, and you might not notice it that much. On the bad days it can be excruciating – you might feel dizzy, pass out, have uncontrollable vomiting or be unable to sleep or get out of bed due to the pain. This is what many chronic pain sufferers deal with every day.
“You’re not sick, I’m tired of you exaggerating it.” “You’re so young, how can you be so sick?”
“You don’t look sick; do you really need to go home?” “I had no idea you were sick; you look so normal.”
Unfortunately, these hurtful comments have all been said to me before by ignorant people who failed to realise that chronic pain can affect anyone.
I have suffered from Endometriosis since I was young but was officially diagnosed when I was eighteen. I am now thirty. Prior to this I was also diagnosed with Poly-Cystic Ovarian Syndrome. I have been lucky in that for the majority of my young adult life I suffered few to no symptoms. I was able to excel in my career, studies, extra-curricular activities, and hobbies. I was used to working upwards of fifty-hour weeks whilst studying my undergraduate degree full time via distance and holding a position on the board of directors for a national charity. I loved working out and maintained a very busy social life. In 2017 things came to a sudden halt when I became very unwell. I started experiencing the most unbearable pain, and it was like my life began to spiral out of control. My Canberra-based specialist had advised my Endometriosis had returned and gotten worse and I needed a more invasive operation. He was no longer able to help me and referred me to Sydney for my fourth surgery. This also began my revolving-door relationship with the hospital emergency department, where I would be admitted for a week at a time and be placed on a ketamine or fentanyl infusion. I think I could name every nurse on the ante-natal ward now; I have been there so often. I was so unwell that I exhausted eleven years’ worth of personal leave in eighteen months.
I spent most of the second half of 2017 travelling. I was determined not to be disrupted by pain, since I had always been fine previously, so I had no excuse to take a step back. Throughout the travel, I was heavily medicated and suffered significantly from my symptoms. My wonderful travel partners became my carers and protectors as well – something that I still feel guilty about. I was deployed with my work for the last three months of 2017 to a location that was quite different to home. I visited the on-site medical centre more times than I can count but less times than I actually needed to. I never missed a day of work though. After that, I have never been selected to deploy again even though I received a glowing post-deployment report.
I was in good hands with my Sydney specialist, he is one of the best in the business. However my fourth surgery did not work. Since this operation, I have been diagnosed with Adenomyosis and diagnosed with Poly-Cystic Ovarian Syndrome again.
I am in pain every day, but on some days the pain is not as severe and debilitating as others – these days are my good days. I am required to take a number of medications which impact me differently each day and I am unable to predict how I will feel as a result. This does make me self-conscious and I am often choosing not to take medication if I have an important meeting or engagement on.
I have experienced both positive and negative reactions to my chronic pain. The majority of the negative comments and reactions are from partners during relationships. My partners’ reactions to my diagnosed chronic conditions have varied. Some refused to believe that I was in pain, some became fed up and ended the relationship during a severe pain flare-up or refused to visit whilst I was in hospital or to wait with me whilst in Emergency. Others expressed their frustration and disappointment that I was unable to participate in activities with them or be intimate due to pain or fatigue. Unfortunately one partner even chose to end our long-term relationship via text message during a hospital admission, where I was undergoing a high-dose ketamine infusion to treat a flare-up and ruptured ovarian cyst and being investigated by both the cardiologist and neurologist teams for unexplained blackouts. Due to the side-effects of the treatment, I didn’t even remember it had happened. I often wonder if I will ever find someone who will love and accept me for who I am, chronic pain and all.
I am lucky to be able to maintain a full-time occupation, something that not all chronic pain sufferers are able to do. I have always chosen to work full-time and in my current role I work with a wonderful team who are very understanding and supportive of me and my health. The support I have received from my team, direct supervisors and senior staff has been incredible and I consider myself incredibly lucky to work within this team and within this organisation.
I am also very cognisant of the impact my illnesses and associated leave has on my team. Although I work with a very considerate team, I feel guilty when I have to attend an appointment, work from home, need to take sick leave or when I would like to take annual leave. This is something I am doing my best to manage with assistance from a counsellor and chronic pain lifestyle techniques however the guilt is not something I have been able to manage yet.
Chronic pain is a financial burden; as a full-time worker with no support from the government, I struggle to fund my own appointments and medications, not all of which are covered under the PBS. Some support from the government for chronic pain sufferers, regardless of their financial situation, would be welcomed and greatly appreciated.
The relationship between a chronic pain sufferer and their health management team is imperative. As a pain sufferer it is hard to develop trust with health professionals due to fear that they won’t believe you or take you seriously. Even before considering their medical advice, it is essential that you can work with them, trust them without hesitation or reservations, and know they will support you in your goals. Chronic pain is different for each person and therefore each person’s case must be treated that way – it cannot be done through a one-size-fits-all approach.
Unfortunately, I have had some awful experiences with health professionals, in particular with a pain specialist based in Canberra. She treated me like every other patient she saw, did not listen to me or try to understand my specific case and unhelpfully prescribed me methadone as a treatment plan. I dreaded seeing her and only lasted a few appointments. I have since started seeing a pain specialist in Sydney who goes above and beyond to support me and is the best specialist that I have ever had the pleasure of working with. In addition to this, I work with another specialist, a general practitioner, an acupuncturist, and an osteopath. Each of these health professionals are excellent in their own way and provide the most exceptional support and care. I am often recommending my health care team to others with similar/the same conditions.
I am continually reviewing my health management plan and ensuring I am doing everything I can to help myself. I have been successful in minimising the number of health professionals I need to see, choosing to only see a select few. I have also been able to cut down on the amount of medication I take in conjunction with my pain specialist which has been challenging at times but has also been successful.
I have the most amazing family and friends who support me every day without fail. I honestly don’t know what condition I would be in physically or mentally if I did not have them by my side. I can only imagine how difficult it must be to see your daughter, sister, friend or loved one in pain and knowing you are not able to help them.
My situation became more complicated last year when I started fainting for no reason, some days up to eight times a day. I have since been diagnosed with a heart condition which was caused by my chronic pain. I have undergone two procedures on my heart this year. I have also had to move back to my family home at the suggestion of a medical professional as it was no longer safe to live alone with my continual faints which often resulted in injuries to myself. I have since moved back in with my very loving and understanding parents. Although I do not always show it, I will forever be grateful for their unwavering love and support. I also have an incredibly special sister who has always been my rock. She is also an exceptional nurse which is very handy for someone like me!
As a chronic pain sufferer my mental health is always at the forefront of my mind. I know that those who suffer chronic pain make up 30-40% of people with a diagnosed mental health condition and are two to three times more likely to have suicidal behaviour. I take active steps to ensure my mental health is managed through undertaking an online psychology course to learn techniques which I practise every day, doing meditation and yoga when I can, surrounding myself with people I love and who love me, giving back to the local community when I am able to and always ensuring I am kind to myself.
One of the hardest things I have had to do is to accept that I am not able to do what I did before I got sick. My pain specialist knows I have high expectations of myself and often needs to remind me that I am not able to do what I used to or what I think I can I do. He tells me that I need to be realistic and look to do only a third of what I think I can do. I am not able to work lengthy days or study more than one subject at a time for my Masters (it has taken me two years of deferring my degree before being well enough to commence study) or do a variety of extra-curricular activities anymore. I frequently spend weekends in bed resting and I often find myself cancelling on friends or appointments as I am in too much pain or too fatigued. On a daily basis, I struggle with guilt as well, the guilt of not living up to my own expectations or to the perceived expectations of others. I know this guilt is something than many chronic pain sufferers battle with too.
I have struggled to accept that I have a chronic health condition. I am still trying to accept that I may never be able to achieve what I was destined to do or what I am fully capable of. I often feel like a failure.
I have found that speaking about my conditions and my pain instead of trying to hide it has helped me to accept these changes to my health. Being open and honest with others has forced me to be honest with myself. Although I am in pain every day, I am confident that I will not always be in pain and I continue to remain optimistic.
I hope that by sharing my story, I can encourage others to share their stories too. By sharing our experiences, we can increase awareness and understanding of chronic pain and help to break down people’s assumptions of what chronic pain is. It is important to remember that there are many faces of chronic pain.