Grace Corcoran, 24, lived with chronic pain from endometriosis for years. The pain started when she was 13 and, despite visiting an array of doctors and therapists, its source went undiagnosed until a few years ago.
What was it like to be a teenager living with such severe and long-lasting pain?
As a teenager I was told by numerous doctors that the pain was a normal part of being a female and that it was something that I would have to learn to manage. When I kept complaining about the pain, and realised that my friend’s period pain was rarely as bad a mine was, I started to question if that was true. They then tried to tell me that it was in my head, which made me doubt myself. A lot of people didn’t understand it and questioned if I was making a big deal out of nothing. Some friends were empathetic and others weren’t. Once I started spending a lot of time in hospital, the only friends I would see were those that would visit me in hospital or at home.
What were your main frustrations?
My biggest frustrations included fighting to be believed and the self-doubt caused by constantly being told this was “normal” or “in my head”. As a young teenager, another big frustration was missing out on activities that many of my friends took part in. I would miss parties and social gatherings. Sometimes I wouldn’t be able to wear the clothing that was “cool”, which resulted in me being teased, because the clothing pushed on my stomach and caused me pain. As I got older and the pain became worse, this second frustration was replaced with missing out on activities that my friends took part in, such as being able to shower and drive independently. I spent one New Years and my best friend’s 21st birthday party in the hospital, which were both big events that I was really sad to miss.
What finally helped you most to manage your pain?
The surgery with Simon Gordon kick started my final stage of recovery. I had spent years undertaking therapy to mentally manage the idea that I may spend the rest of my life in pain and dealing with the social issues I had faced. After the surgery in 2018, I completed six weeks of intensive work in the chronic pain clinic at Camberwell Epworth. This consisted of an hour a week of physiotherapy, psychology, occupational therapy and sport-physiotherapy. This, alongside the much better mental health state that I was in, allowed me to gain control of my pain again.
After living pain free, how distressing was it when you felt the pain returning?
Since being diagnosed with endometriosis, a two-year period was the longest I have lived without pain. Twinges of pain started coming back after one year and it began getting more and more frequent and painful. It was very distressing the first time I felt pain again, and I had to calm myself down through some of the techniques I had previously learnt. I felt very anxious that I would become bed bound again and lose my independence. I tried to ignore the problem and focus on the present where I was mostly pain free.
How has being helped to manage your pain opened up your capacity to do what you love?
I began scuba diving once I was completely pain free again, but the first time I lifted up the diving gear I was very anxious that it would cause a pain-flare. When it didn’t, and when the activity itself didn’t, it gave me more confidence to try other things that I was scared of trying, in case they flared up my endometriosis pain. It allowed me to become a confident, young 20-something year old, who wasn’t constantly worried and cautious of how my body would react to simple tasks.
Tell us about your studies and plan to work in Pacific Island nations?
I study at the Australian Catholic University in Melbourne and will finish a double Bachelor Degree in Applied Public Health and Global Studies at the end of this year. I really believe that it is our role as global citizens to support our neighbours, and the rest of the world, in any way we can. I looked back on how I was treated in Australia, with one of the greatest and most developed health systems in the world, and realised that if it took me seven years to be diagnosed, and I had to fight for myself every single step of the way, even in Australia, what would it be like in a more developing country. It made me question if people on little islands of the Pacific had the resources to diagnose, treat and empathise with endometriosis patients, if we didn’t even have that here in Australia. I would like to work with people in the Pacific to develop culturally-specific ways of managing and treating women’s health issues, specifically endometriosis.
Chronic pain is faced by so many Australians, and a lot of the time it is invisible to everyone else. As chronic pain patients, we need to be kinder to ourselves and know that we are not alone and there are resources out there for us. As Australians, we need to be more empathetic to those whose pain you cannot see but is very, very real.
What would you like to say to people struggling to manage chronic pain?
Chronic pain is real. My experience is real. Pain that causes you to spend days in bed, every single month, is not normal and is not a part of being a woman. Just because we don’t look sick, doesn’t mean we aren’t sick. Just because we are in pain now, doesn’t mean we won’t get better. If you’re out there and thinking that this is how your life will be for the rest of your life, I understand. I have been there. Please don’t give up, because it does get better.
The Faces of Pain video series (which tells the stories of everyday Australians living with chronic pain) and the Understanding chronic pain booklet (which explains what pain is and how best to manage it) were launched in National Pain Week (July 27 – August 2). See www.nationalpainweek.org.au #NPW2020