My story of living with chronic pain & the stigmas surrounding it
My story began after Christmas 2002 when I woke up one morning and my right knee had swelled to double its size. My parents originally thought a spider had bitten me, but no bite marks were found. I was taken to hospital and had hundreds of tests done, had antibiotics flooded into my body, and a dozen or so scans. After a week in hospital I had an MRI scan which showed inflammation and the diagnosis of Juvenile Rheumatoid Arthritis was made. It was found in four major joints – both knees, my right wrist, and my right ankle. My treatment plan at the time consisted of physio and medication; I was also given night casts for my legs to prevent me from bending my knees in my sleep. My parents recall how I had to be carried around every morning as I was in too much pain to walk or move independently. This whole ordeal went on for at least 8 months, and then I suddenly went into remission. I didn’t experience any issues with arthritis or chronic pain until I was 12, when I started experiencing aching in my knees.
My parents and I were worried that my arthritis had returned and we were immediately referred to a paediatric rheumatologist. My arthritis hadn’t returned thankfully, but I was diagnosed with hypermobility syndrome in my joints – meaning that my joints were too flexible so they moved too much in the joint socket which causes overexertion of the joint and subsequent pain. The diagnosis was simple, all I had to do was build up the muscles surrounding the joint and, in theory, my pain should go away. For a few years this is what happened, my pain only reoccurring after playing sports – I eventually stopped participating in sports so that the pain wouldn’t reoccur. I never told anyone that the pain is what made me stop doing sports, I just told everyone I didn’t enjoy them anymore – which was a lie. Already at the age of 14 the pain from a chronic condition was affecting my life, and already at 14 I was lying about how it was affecting me so that people thought I was okay.
Early 2015 is when things started to go downhill. The pain in my knees came back, but more intensely in the morning – a classic sign of rheumatoid arthritis (rheumatoid arthritis is known by the abbreviation of ‘RA’). Another symptom I noticed was that my right knee had become slightly swollen and hot to the touch, another classic sign of RA. My parents and I went back to my rheumatologist and MRIs and blood tests were ordered for confirmation of what we all knew was going on. For the second time in my life, I was diagnosed with RA (except this time it was called Juvenile Idiopathic Arthritis (JIA for short)). I don’t remember feeling any short of emotion at the diagnosis, most likely because I already knew what was going on. If anything, I was almost relieved to have a diagnosis especially one that I had already experienced.
I suppose my thinking was that when I was first diagnosed I didn’t remember experiencing much pain and my parents never mentioned anything about pain either. Rather, they always mentioned how I was always playing and it never seemed that the supposed pain I was in ever bothered me. A distinct story I remember being told was of a beach trip that my family went on during my first diagnosis with arthritis, I had been administered a steroid injection in my right knee a few days prior to the trip and it allowed me to run around like the 2 year old I was. In all honesty, I suppose I believed that my experience the second time around would be similar. I would most likely be in a bit of discomfort but still be able to live my life, and eventually I would go into remission like last time. This was definitely wishful thinking. Even though I started on my arthritis treatment plan around August of 2015, the disease was progressed quickly. In terms of my chronic pain, things didn’t really take a turn for the worse until the beginning of my senior year of high school in 2017. The medications I was on were working to an extent but the arthritis was still progressing at a fast speed – meaning my joints were constantly inflamed and severe, irreversible joint damage was becoming more likely.
I will admit that if I could change anything about my senior year it would definitely be that I didn’t have to deal will pain. Every morning I woke up in severe pain in my joints – specifically in the joints in my jaw. Most days I woke up crying, unable to move my neck or open my mouth. I suppose I’m lucky that arthritis primarily affects joint movement in the morning because by noon I was able to function ‘normally’. By functioning ‘normally’, I mean that I was able to talk with minimal pain – mainly because I would be regularly taking strong painkillers and anti-inflammatories. I truly believe that if I did not have access to pain medication I would not have made it through the day without constantly crying or screaming out in pain. People did not see that side of me though – the person who could not handle what life had thrown at me. The only person who really saw that side of me was my mum. She was the one that had to coax me out of bed every morning and into a boiling hot shower in hopes of relieving my discomfort.
My mum was also one of the only ones who would not pity me. I would constantly hear from other family members and complete strangers how it was so depressing when a young person was sick and in pain. Pity obviously does not help me in anyway, but I understand how chronic illnesses and chronic pain are such unfamiliar topics for many people and pity is the brain’s way of showing support. I would rather pity than ignorance. Ignorance comes in many forms, but the main two forms of ignorance that I regularly experience are when people assume that if I’m not screaming in pain that I’m completely fine and pain-free, the other form that I get is when people compare their acute, treatable pain to the pain that I experience every day. I’ve had people get annoyed at me for not wearing high heels to a party, people have gotten upset with me for ‘taking to many painkillers’, I’ve even had people blame me for being exhausted 24/7 and not socialising how I normally would on a ‘good’ pain day.
People can’t seem to grasp that me being in constant pain change how I live my life. They don’t understand that I had to grieve the life I wanted to originally live. I can’t be spontaneous in my life anymore. I have to plan, pace and be constantly listening to my body otherwise I risk suffering a ‘flare’ and experiencing even worse pain then I experience now. Even small things like randomly deciding to stay the night at a friend’s can’t happen because I have medications I have to take every night at the same time. Even now, when I’m technically in remission from my arthritis so I don’t experience morning pain or inflammation, I still have to plan, pace and listen. The pain I experience today is different than any other pain I’ve experienced. It’s not specific, and I generally deal with complete body aches every day. My daily jaw pain leads to constant headaches, neck pain and back cramps and I can’t even sit in a two-hour lecture without wanting to scream. Sleeping has become harder, even though I’m constantly exhausted – comfort isn’t something that comes easy to me anymore.
Even though I experience intense pain every day, I constantly try to remind myself of everything I’ve accomplished since my journey with daily pain began. I graduated high school, started studying at university, got my driver’s license and, work part time. all these accomplishments don’t mean I’m okay, or that my pain doesn’t bother me. My accomplishments are just evidence of my perseverance. They’re there so I can look back on them on really bad days and see how far I’ve come. They aren’t evidence that my pain doesn’t wear me down, they don’t erase the fact that every night I lie in bed wishing the pain would go away, and they especially don’t replace the fact that I have days were I can only silently cry because the pain is that bad I can’t think straight. Lastly, my accomplishments are also not evidence for people to use against me.
I’m most likely going to spend the rest of my life in pain, an idea that terrifies me, but what I’ve already done in my life helps me forget that fear. I try and live my life one day at a time, not remembering how bad the pain was yesterday or last week – I’ve actually taught myself how to dissociate from a lot of the pain I regularly feel purely so I can live as normally as possible. Most days I cope, but sometimes I don’t cope, and that’s also okay.