As the year comes to an end, I like to reflect on my experiences over the past twelve months. This year was particularly difficult for me, and surprisingly it had nothing to do with COVID.
It’s been a year of self-discovery, and in turn, learning. Learning to live with my pain, learning to love myself, in spite of it.
Learning to change my mindset for the better and accepting things as they are.
Living with chronic pain has, and continues to be, a constant struggle. A silent struggle I have learnt to endure, often by myself.
At times I feel defeated by it, like the weight of my illness is too much to bear.
I have dissociated myself from it, hoping it would make living with it easier. I’ve tried ignoring it, until I’m left in a heap on the ground because of it.
But only recently have I started loving it.
Over the last 10 years, I have had a love/hate relationship with my body. I’ve been sad, angry, frustrated, desperate, hopeless. But I’ve been learning that the way I feel about myself, and my body, has a huge impact on my ability to live with the pain, and be okay with the diagnosis.
The diagnosis.
When I was 19-years-old, I was working for a government agency. I spent most of my time on the computer and would often commute between my hometown of Grafton and Coffs Harbour, where I worked.
After some time, I noticed pain and stiffness in my hands, wrists, and elbows. The pain then spread into my neck, shoulders, and back. It eventually got so bad it stopped me from doing my usual role.
After about six months of medical appointments and blood tests, my specialist came back with a diagnosis - fibromyalgia. (I note: some doctors don’t believe this illness exists but the pain stems from a heightened sensitivity.)
It was pretty devastating at the time. Especially to hear, there was no known cure, and I would have to live with the pain for the rest of my life. It felt really unfair.
At this stage, I needed three sessions of physiotherapy just to function and do my job. After almost a year of my health getting progressively worse, I decided to take an extended break from work.
My employer tried to accommodate me the best they could, but in the end, it was not enough. I couldn’t perform my job and felt pressure to return to my normal duties, which caused me a lot of anxiety.
I wanted to work. I wanted to do my job but there was not enough support or ergonomic equipment available to help the situation.
I was lucky I was only nineteen at the time and the start of my career. I decided to have a break and explore the world. I originally applied for a year of unpaid leave but as things escalated with my health, I felt I had no other option but to quit.
To me, it felt like my employer thought I was making things up or making excuses for myself. It felt like they didn’t care about me as a person and instead, all they cared about was the bottom-line. I wasn’t ready for this fight, so I walked away.
After some time overseas, I returned home and decided to go to University. The first year seemed to go by without a glitch. I did well and was able to transfer into the Law Program at UNSW.
After relocating to Sydney, things seemed to flare up again with my health. The first semester I barely scraped through. I couldn’t hold a pencil for more than 10 minutes without needing a break. It didn’t matter how much preparation I did, I could not physically do the exams or keep up in classes.
I stressed myself out trying to meet deadlines I knew I couldn’t make and my mental health deteriorated.
While moving away from home also contributed, there were many other barriers I had to face. Poverty was a big one and I sometimes had to choose between paying for my medication or eating. I’m lucky this didn’t happen often, but it is a reality those with disabilities and chronic illnesses often have to face.
After chatting with my faculty advisor, I was made aware I could get adjustments while at university. The adjustments took a lot of pressure off. I still didn’t meet assessment deadlines but at least there was some recognition that I needed some more time. I was glad I didn’t need to go to the doctor every time I needed an extension.
I think Universities are doing a lot of great work when trying to create equitable access to higher education. I know I wouldn’t have gotten through without these adjustments. However, I still believe there is a long way to go in shifting mindsets and creating true equitable experiences for all students.
Like our health system, higher education providers are structured, and therefore better placed to provide support for short-term illness or very run-of-the-mill conditions. I do not believe they are doing enough to think outside the box and provide substantive structural change, enabling a more equitable learning environment.
Those with consistent chronic conditions struggle in these spaces, and those with neurological conditions are essentially structurally excluded.
What do I mean by this? I mean that course content is assessed in a very ableist way - without considering how learning and teaching can be adaptive to be more inclusive. I also mean that some degrees are structured to only make it possible for those with neuro-typical thoughts and behaviours to succeed.
For example, medical programs are full time. You cannot choose to do them part-time, even if this makes sense for you. Therefore these programs exclude students with diverse needs, creating professions that in turn have little diversity.
Twenty-twenty
Earlier this year I returned to university to finish my law degree. I had dropped out in 2016, feeling worn out and disillusioned. Returning was a big deal for me. I had spent four years in the workforce, slowly working my way up the ladder, and finally felt things had plateaued enough for me to pick things up again.
I shuffled things around with work and studied on nights and weekends. Then within a month, I was in excruciating pain. The pain was so bad I constantly felt like throwing up. I could not get through the day without potent painkillers that pretty much wiped me out.
I had to take a lot of time off work and unfortunately had to pull out of my studies. Again this felt unfair. I worked hard to try to get things under control over the last couple of years. It felt like my body had betrayed me. I hated it.
Selfie: After days of being in agony. March 2020
After weeks of doctor’s appointments and blood tests, I finally got referred again to a specialist. I told them my concerns and felt incredibly frustrated when all the advice I received was “let’s change your pain medication and you’ll need to lose some weight.”
It felt like a cop-out to say that my weight had been a contributor to my pain. This is a frustration felt by a lot of people with chronic conditions. It felt like lazy health care to suggest this but I did what they said. I worked hard and lost 7 kilograms. The pain didn’t get any better. I was frustrated that things did not improve and I was frustrated with myself, with my body for putting me through this.
I kept following up with things I could do or medications I could take, but it felt like treading water.
Then COIVD hit and all of my specialist appointments got cancelled. I was in a holding pattern for weeks. I couldn’t move forward and I was worn out. Managing my pain became more and more difficult.
I was finally fed up and desperate for a solution, one that I had control over. The only thing I had control over, was how I thought about the situation.
It had been six months of agony and I knew being upset about it, wouldn't make things better for me. I understood there was no magic cure. I would have to endure the pain for the rest of my life.
So, I turned to pop psychology - Brene Brown’s Rising Strong to be precise. It was transformative. Learning that we must integrate our trauma into our understandings and stories of self in order to live more authentic lives was mind blowing. I had compartmentalised my illness to the point it became this distance, abstract part of my identity and I didn’t associate with it.
Making peace with the pain and integrating it into how I identified with my sense of self was like a light bulb moment. Owning this part of my life, and being able to be vulnerable enough to finally talk about, allowed me to accept things as they are, and be more gracious and loving with myself.
It some how made accepting it more possible and less hopeless.
I think this is one of the biggest struggles for people with chronic conditions - how do you keep going on?
Knowing your condition will always affect your life. Having to make decisions around your condition. Having to explain things to loved ones who just don’t understand. Constantly trying to feel understood. Getting people to understand that you are smart, capable, and motivated, you just have other barriers to overcome.
There is a lot of mental fatigue associated with keeping up appearances or acting like everything is fine.
I still have a long way to go to being content with my diagnosis but things feel a little more hopeful now that I am learning to love that part of myself.
