My journey with chronic pain first began in 2015. I was sixteen at the time and in year eleven. It began by getting daily headaches and dizziness that would distract from my school work and make it difficult to concentrate. This soon progressed to fainting and I would visit the nurse’s offices quite frequently. I would leave school early at least once a week due to these symptoms and many of my classmates thought that it was simply to get out of doing work. I saw my GP and they dismissed it as a combination of puberty and low blood pressure.
Throughout the next few months I started experiencing migraines. Just one every now and then before progressing into daily migraine attacks. I had to leave school early on many days because I couldn’t stand the noise or the lights as they made my condition worse. I tried a few migraine preventative medications, but nothing worked. These also made it difficult to concentrate at school.
A year later, at a job trial, I was still experiencing the dizziness and I ended up fainting and having a seizure. I went to the hospital to be checked over and the doctor concluded that nothing was immediately wrong but suggested that I get a brain scan from my GP, just to make sure.
I went into this brain scan thinking that it was totally precautionary and that nothing would come from it. Two hours later my mum received the news that I had a cyst growing on my pituitary gland and that I was booked in to see a specialist neurosurgeon at the hospital the next week. This was huge news. It confirmed that the symptoms I was experiencing weren’t just in my head and that I knew there was something wrong with my body.
The neurologist explained that the surgery needed to be done as soon as possible as the cyst was growing towards my optic nerve and I was at risk of losing my vision. This news was really difficult as I was in year twelve and my focus was on achieving to the best that I could, not on months of recovery after surgery.
Two weeks later I went into a three-hour surgery to get the cyst removed. The pain that came next was unimaginable. I knew it would be bad but there was no way I could have prepared myself for it. The morphine drip that I was hooked up to couldn’t even touch the pain. I spent the next three days in the ICU being constantly watched by nurses. I was so lucky to have my family there with me for comfort as nothing else seemed to work. I couldn’t walk, sleep, eat or shower at first because of the pain. After the third day I was moved to the neurological ward. The pain that I had in my head was so sharp and constant that I thought something was seriously wrong. I was also having so much blood-stained phlegm from the surgery that I couldn’t sleep at night.
After eleven days in the hospital my pain was finally manageable enough to go home and this is where I stayed for the next month. Majority of the time I was in bed or asleep as I tried to recover quickly to get back to school. Many people sent me flowers and cards and reached out to me during this time which made me feel that people understood that I was sick. It felt okay to miss out on things because they knew what I was going through.
After a while I was able to return to school. First for an hour or so and then progressing to a full day. I was able to get back on top of my study and worry about the things everyone else my age was – finishing school and beginning a career. It took around six months for my body to fully recover. In this time, I experienced extreme fatigue and it was difficult for other people to understand as my surgery became part of the past.
Six months later I was completely pain free and had just graduate high school. I had not felt that happy in quite some time. I was thriving at school and graduated as dux in three of my subjects. I could go out and do things normal teenagers could do and I finally felt like things were falling into place.
My dream was to become a doctor because I felt that if I could help people, like I had been helped, then that was pretty special. I wanted to give back to a profession that had given me my life back. I was accepted into the course I needed at university to do this and I began my first year in 2017.
About six months into my degree I started getting migraines again. They were the exact same as the ones I had experienced in high school and I was worried. These migraines again turned into daily attacks and were unpredictable. I missed a lot of classes and couldn’t hand up assignments on time. I felt that my teachers didn’t understand how sick I was because I looked fine on the outside. Sometimes I thought that if I did have a physical mark of illness that they would understand better and could offer some grace. Unfortunately, the university I was attending didn’t offer me much, if any, help with my condition and I was forced to defer until further notice.
At the beginning of 2018 I had a two-year post-op brain scan and appointment to check on the site where the cyst had been. As the symptoms had started again I had a suspicion that it may have started to grow back. This was confirmed in the appointment and my specialist said that they would leave it for six months and then reassess as it was growing slowly. My specialist does not believe that the pain and cyst regrowth are related and so they are unsure of what is causing the chronic pain.
I spent the next eight months working part-time as a receptionist as I couldn’t attend university and I certainly didn’t think I could achieve my dream of becoming a doctor. I looked into all sorts of medicines, both pharmacological and natural, to try and gain some relief but none of these worked. I went to my GP so often that the receptionist knew my name when I walked in. I got to the point where I was thinking that surely this couldn’t go on forever and I was worried that I wouldn’t be able to have a career or a family.
At the beginning of 2019 I decided to give studying another go, but this time focus on natural health, something I am passionate about. Before enrolling into the university that I am currently studying at, I asked how they would help me if I couldn’t attend class, do assignments or had to have surgery again. They were extremely understanding and supportive during the enrolment process. During my two years there they have been gracious and kind to me when I couldn’t do things other people can. They didn’t make me feel bad for being chronically ill and they believe in me despite what I am experiencing. It’s interesting that something that was so difficult in the past is now achievable. The only thing that has changed is the mindset in which I am viewed.
It is 2020 now and I am still experiencing daily migraines. I have had a constant headache for the past three years and the only time I can recount being pain free is the summer of 2016. It is the most difficult thing I have ever had to deal with. All of the medications recommended to me by various health professionals have not worked. I have been started on opioids and even these don’t begin to touch the pain. I am undergoing Botox treatment at the moment in the hope that it will relieve my pain and give me my life back. Unfortunately, the surgery that left me pain free previously is not warranted any time soon as the specialists don’t think it is necessary with the slow growth and cannot find a link between the cyst regrowth and my pain. I have been told at multiple appointments that I am a medical mystery.
On a bad pain day, I cannot get out of bed. I can’t stand lights and sound and there is little that helps. On these days it has meant the world to have my boyfriend with me as he brings me comfort and joy. There is not much he can do but listen and be there but for a chronically ill person this is the most important and valuable thing in the world. When I had my surgery everyone I knew would ask how I am but on my bad pain days no one really knows except those living with me.
On a good pain day, I can go out for a few hours, study and sometimes even exercise. It is difficult to have a good day though, as I know that the productivity can make my pain worse the next day.
I manage my pain by taking each day at a time. My mindset has adapted to be a survivor. I always think “if I can get through this I’ll be okay” and so far, I have been. Sometimes it is good to distract myself from the pain by being with family and friends and other times I get through it by allowing myself to grieve the life that I am missing out on. I’m hoping that soon I can say the Botox treatment is managing my pain so that I can begin truly living my life.
There is a lot of stigma that surrounds chronic pain and it hurts, sometimes even more than the pain itself. I am different to every other twenty-one-year-old, and I understand this, but sadly many do not. I wish that people could look past my physical appearance and acknowledge that there is a pain that cannot be seen. There is a stigma that headaches are a simple excuse to get out of things and I have had multiple occasions where people have thought this of me. I have been labelled as antisocial and lazy because I have to cancel plans when I am having a bad pain day. What these people don’t understand is that it is utterly heartbreaking to not be able to do the simple things, like getting coffee with a friend or attending their birthday. I’ve missed out on so much because of chronic pain, including my dream job, and to have people think things that aren’t true brings a whole new emotional level to living with chronic pain. Some people, doctors included, have viewed me as a drug addict because I take opioids and strong medications. I wish the stigma around this would end. It is not our fault that we need help to cope with our bodies and we wish we didn’t have to use them either.
My experience with the healthcare system has been mostly positive. There have been a few nurses and doctors that have had poor bedside manners, but I don’t think this is a reflection on them but rather the strain on the system. Once when I went to the emergency for pain that I couldn’t control at home and the doctor in charge told me that I was “wasting resources” and to stay home for migraines. Again, I think that it is the stress and strain of the system plus the stigma that resulted in his attitude. Other than this though the doctors and nurses that I have dealt with have been fantastic people. Each one has tried to help me, even when my pain seems invisible. They have offered help when I have asked and encouragement when I didn’t even know that I needed it. I am lucky to live in a country where I have access to help.
Overall, while I am hopeful that I will find an answer to my pain soon I am also thankful for it. It has developed strength within me and opened my eyes to other people’s pain. I really do believe that this has all happened to me for a reason – and if it can help even one other person then it is all worth it. Chronic pain is difficult to deal with, but we can do it together.