It felt uncomfortable to live in my own body. One day it was like I was being stabbed with a hot knife one day, the next, I felt like I was being suffocated. I have lived with chronic pain for three years – since I was 15. Sometimes it feels like I was robbed of a normal high school experience – of my teenage years. But it gets better. Now I’m playing catch up. The pain may never go away.
In June of 2017, at the age of 15 and just after winning the Australian U16 National Women’s Baseball Championship, I was getting ready for the holiday of a lifetime to Europe with my family. Within the space of two weeks, I was passed out in the middle of the Sistine Chapel, and then I found that I became unable to walk landing me in a wheelchair in a hospital in London. I was having seizure type activity, a crazy fever, I couldn’t eat without throwing up, I had unbelievable pain and dizzy spells to top it all off. With doctors in the hospital in London stumped, I flew back home to Australia. For the next 5 months, I was unable to leave the house unless I was in a wheelchair. I couldn’t wash myself without help. I had to sleep on the couch sitting up so I could breathe properly. If I wanted to go to the bathroom I had to crawl, and I was unable to go to school for the remainder of Year 10. Not exactly what a 15-year-old who was used to being pretty independent wanted to have to deal with. This was the year I turned 16, had a party, and got my L plates to drive – which I do not remember anything of, but there are photos to prove I did it!
Many surgeries, scans and blood tests later, they found everything under the sun - abnormal spleen and liver function, glandular fever, chronic fatigue, minimal production of stomach acid, a stomach parasite, adenomyosis, unexplained weight gain, insomnia, low blood pressure, nutritional deficiencies, an essential tremor, chronic headaches and the list of symptoms goes on! I have seen almost every type of doctor you can imagine... a GP, Surgeon, Gastroenterologist, Gynaecologist, Neurologist, Physio, Exercise physiologist, Paediatrician, Occupational Therapist, Pain Specialist, Psychologist, Radiographer, Naturopath, Acupuncturist, Massage Therapist, Chronic Pain Specialist and many more who were unable to find a conclusive reason for my symptoms. Doctors are meant to make you better if something is wrong. Right? With no medical explanation showing up why I was so sick, my GP at the time decided that I must have been making it up, so off I was sent to be psychologically evaluated.
After this, I vividly remember crying in a KFC, just hoping they would find something wrong with me to explain why I was feeling the way I was. This event sent me into a bit of a downwards spiral, and I became very depressed and anxious to the point where I didn’t leave the house for many months, and eventually, my friends from school stopped coming to visit me because it was too hard for 16 year olds to cope with a sick friend. I felt so isolated and confused as to why this was happening and missed a lot that year - The school’s snow trip, most of my Year 10 formal, and countless opportunities in sport and music. I sought treatment all the time with almost a doctor’s appointment every two days since the hospital in Europe, trying everything to get myself back to ‘normal’ for the next few years.
After a lot of physical therapy, I was finally able to walk again, and began back at school in Year 11 part time playing ‘catch up’. Even after some of these issues and symptoms were ‘resolved’ I was left with non-stop pain, an essential tremor, and chronic headaches. All of these symptoms could only really be explained by one big umbrella term – chronic pain. Being told you have chronic pain and to go home with no treatment is one of the hardest things you could imagine. At 15 to be told that there is no way of fixing it is incredibly hard to understand. The doctors know what is wrong, so why aren’t they treating it?
Throughout Year 11 in 2018, I worked hard every day to try and get up, go to school, do the work and get my physical fitness back. My ‘normal’ used to be training 7 days a week for baseball and fitting in work, music and school around that. Suddenly, I didn’t have any of that. I used to play drums and had to stop because the shaking was so bad. I was learning to walk again so sport was out of the question, and I couldn’t concentrate or stay awake long enough to learn anything at school. Once I found a new GP, he referred me to the Sydney Children’s Hospital Pain Clinic. This is where I was told I should never expect to run and play sport like I used to, and to keep a realistic perspective of where I would probably be academically because I was still learning to write again with my essential tremor. Me being as stubborn as I am, I took this as a personal challenge to prove them wrong despite the pain and ongoing symptoms. It was recommended by my psychologist to choose a sport I had never played before seeing as then I couldn’t be frustrated, I wasn’t playing like I used to. So, I decided that I would start playing AFL. I began that year, and 3 months out of a wheelchair I was playing in my first game in division 2 U18s AFL. As time went on, I started to get fitter and fitter, and eventually made my way into the first-grade team. The only explanation for why I felt better playing was that my body was meant to be in pain from being bumped around, so it didn’t create any more pain on top of that. The irony when I felt better getting tossed on the ground than when someone bumped past me and it felt like I broke my warm isn’t lost on me either!
Since I got told that I wouldn’t reach the same level of activity and should be realistic about ever running that much again, I have run two marathons, two lot of 10km fun runs, won two first grade AFL championships, been to state athletics for javelin, played in the local representative softball team, and played in over ten school sports teams. It wasn’t easy, and I’m not saying it didn’t hurt, but I did it. Though, this wasn’t easy, and I was lucky enough to finally find a psychologist who was amazing and helped me work through my depression and anxiety, helping me to adjust back into normal life.
Then came year 12… The chronic pain and headaches meant some days I was unable to go to classes because I couldn’t concentrate or remember much, but still worked hard to catch up and be a part of my grade during my last year at high school. I was lucky enough at my school to have a very supportive team of teachers who worked to make sure I kept up with the rest of the grade and provided me with the provisions I needed to ensure I was able to complete my exams. I didn’t miss too much and ended up doing really well in school. The day before my HSC, I went to the doctors and was told my stomach parasite had come back and I needed to complete a few rounds of very strong antibiotics that would make me quite unwell during my exams. At the same appointment, I was told this day that I had deficiencies in almost every nutrient and irregular hormone levels, so the doctor was quite shocked I was able to get up each morning and function at all. The not so great news I was used to with doctors didn’t get me down, so during all of the commotion, I did my HSC exams, finishing up high school with an ATAR of above 95, 5 early entry acceptances to university, and acceptance into one of my dream courses Radiography at USYD. I worked really hard during the whole time I was sick to avoided as much pain medication as possible but there were periods when I ended up popping pills like it was candy because that’s what I needed to get through the day. I ate healthily, didn’t go out late, exercised, kept up with school... but I was unhappy because the outcomes weren’t coming my way, so I ended up feeling like I had missed a big part of the ‘teenage experience’. Even though you would never catch me out past 10pm because I needed sleep to make sure I was okay, I had a semi normal last year. It’s as good as I could have asked for considering everything.
Now to this year. I am now enrolled full time in a Bachelor of Applied Science (Diagnostic Radiography) at the University of Sydney. I started my own business, Nerd Zone, and I have been selected in the first-grade open women’s AFL team at my local club. I like to hold onto the idea that I can always try again tomorrow, and eventually with time I will get better.
So, lots of people ask me, what do I want people without chronic pain to understand? I want them to understand that chronic pain is different for everyone, so what has worked for me, might not work for another person. Given that 1 in 5 people are affected by chronic pain, you would assume that more people knew about it, but seeing as they don’t any attempt to understand chronic pain is undoubtedly appreciated. With me, each day is unpredictable so there is no way of knowing if tomorrow will be a ‘good day’ or ‘bad day’… you just have to take what comes and do your best. I sometimes wish I could scream this to the rooftops, but I wish that people did not take their health for granted. I wish they would eat well, sleep well, exercise, and do everything possible to make sure they are able to enjoy the little things in life like going for a walk. There are so many good things in people’s lives, yet I still hear them complaining and worry about the small stuff.
Pain is very complex and a subjective experience. You will unfortunately never be able to feel exactly what someone else is feeling, but there are a million ways to describe pain, so I hope that people can be patient with others who have chronic pain, and listen to them.
Even if someone looks fine, don’t assume they are if they have chronic pain. We get very good at masking how we are really feeling just to get through the day. This extends to people with any disability. When I was in a wheelchair, I was lucky enough to be able to stand up out of the car and take a couple of steps to sit down in the chair so that it was easier for my parents, but had I walked more than 10 metres I would have collapsed.
Despite this, we regularly got yelled at by people for using the disability parking spots (even though we had a disability sticker) so I stopped wanting to go out because I would get upset easily by it. Sometimes we are good, sometimes we are not. Please don’t get offended if we can’t go out or keep up much because we are unable to. Major changes to mood happen because of pain. We want to be there and be pain free, but sometimes that isn’t possible, so just wait out for a good day and I assure you it will be worth the wait!
Overall, I wish people realised how lucky they are. There was nothing I wanted more than to get up out of bed easily and be a ‘normal’ teenager. I have made incredible progress thanks to an amazing family, amazing boyfriend, and wonderful friends I made along the way. The things people do might not be easy for them. I have accomplished a lot despite how I have felt physically because I have had such a great support network, but alone I would struggle often to get anything done. Even these amazing people can sometimes forget how sick I was and that it’s still a bit tough to manage everything, but they always pick me back up and I hope everyone with any illness or disability it fortunate enough to find this kind of support. There is hope that chronic pain can get better for people because it has for me.