My story ends with me accepting I am disabled – even though I don’t look disabled.
My journey with chronic pain commenced in June 2017 when I got a sore throat. After a few weeks the sore throat disappeared but I was left with a lingering fatigue and was spending days in bed not understanding why. Unlike most people with chronic pain and fatigue, I was fortunate to have an amazing doctor who ran literally hundreds of tests, which all came back negative. In March 2018 I was referred to a Myalgic Encephalomyelitis specialist. After a 10-minute physical and history I got the diagnosis I was dreading/expecting: Myalgic Encephalomyelitis (ME).
ME, also referred to as Chronic Fatigue Syndrome (CFS), is still a mystery with the medical community. The ME Action Network defines ME as “…a systemic neuroimmune condition characterised by post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after even minimal exertion). It causes dysregulation of the immune, nervous, and energy metabolism systems.” As a multi-system disease everyone will have a different experience with ME. For me, one of my key symptoms is widespread chronic pain in my muscles and joints.
At 27 I was frustrated at my body and just wanted my life back. I could barely walk 10 minutes without becoming bed ridden and while I was managing to work, naps were a regular occurrence during the day, and I would come home and just sleep. My weekends were spent resting, I didn’t see my friends for 3 months and all I could think about was the constant pain.
In April 2018 I visited a clinic specialising in the rehabilitation of invisible illness. Over 7 months I worked closely with my incredible Exercise Physiologist to develop strategies to improve my symptoms and get my life back. We discussed the science behind my symptoms, which allowed me to understand why I was feeling the way I was feeling and how I could improve my symptoms. As a caveat, the approach we used was a combination of graded exercise therapy and cognitive behaviour therapy which is considered a controversial treatment option for people with ME, so please talk to your health team before you embark on these approaches if you are at the start of your ME journey.
One of the first techniques we discussed was ignoring my symptoms. At this time, I would wake up every morning to scan my body for symptoms. Every day I would expect to wake up physically unable to get out of bed because of the pain and fatigue, and if I was having a few good days, I would anticipate a crash (aka flare in symptoms). Initially I was sceptical that consciously not thinking about my pain could make a difference, but 2.5 years later I don’t think about my symptoms on a daily basis.
Fast forward to early 2019 I had assembled an amazing health team – consisting of 2 GPs, 1 ME specialist, 1 Nurse, 1 Exercise Physiologist, 1 Myotherapist and 1 Osteopath; researched possible treatment and medication options; travelled to the USA and Bali and accepted I had a disability. On the outside my life was ‘returning to normal’. I even added a second Exercise Physiologist to my team who helped me increase my exercise tolerance and gave me exercises to increase my muscle strength. I was running for 30 seconds, ‘didn’t look sick’ and metaphorically on top of the world. What the world didn’t see was that my pain levels were becoming unbearable and my strategy of ignoring the pain became impossible. When I was alone, I was frustrated by the unexplained increase in pain and could regularly be found in the foetal position on the floor of a hot shower, in tears, just trying to stop the pain. Everything hurt and if I even lightly touched my arms or legs the pain would be excruciating. If you have never experienced chronic pain, mine could be described as pressing a really bad bruise, but constant and without the bruise.
Bringing my amazing health team to a total of 10, I added a Rheumatologist. Those of you in the know will know what happened next. In addition to ME I now had Fibromyalgia – another medical condition no one had heard of or understood. Yay! Personally, the diagnosis was a relief as it meant I could get stronger medication to manage my pain levels. Side note – I have only just found the right med to manage my pain after trying another one unsuccessfully for the past year.
Able to ignore my pain again, I was now left with the annoying chronic fatigue. Unlike chronic pain, people without chronic fatigue think they understand what this experience is like. To clear up some misconceptions, no you don’t have chronic fatigue if you feel tired and no sleep does not help. If you’ve never experienced chronic fatigue, imagine having jet lag. All the time. Without the excitement of travel. My Sleep Specialist (health team member # 11 for those keeping count) helped me understand my fatigue. Not to brag but I can fall asleep on demand within 5 minutes. Despite some amazing medication, I will always live with my chronic fatigue.
It is now May 2020. At the time of writing, my back and elbows are in too much pain to ignore, for no reason, but I am feeling the best I have felt since first getting sick in 2017. I have also been participating in a study working towards a diagnosis tool for ME and I’m waiting to see if I’m (un)lucky enough to hit the trifecta of chronic illnesses no one has ever heard of. We still have a long way to go in 2020 so I don’t know what the future will hold, but it would be remiss of me to not mention my experience of the COVID-19 quarantine. It has been amazing! I am accumulating more spoons than I’ve had in years (see The Spoon Theory by Christine Miserandino). Recently however, I noticed an increase in my pain levels. It took me some time, but I’ve now linked this to a flare in my fibromyalgia which was caused by less incidental exercise throughout the day. My quarantine has taught me my chronic illnesses are like Jekyll and Hyde. ME needs rest but Fibromyalgia needs exercise so I need to find that perfect balance. This time has allowed me to explore my limits and focus on building interests outside of work. It feels like I finally have my life back, even though the life I ‘got back’ is different to my life pre chronic illness.
Accepting I had a disability was the ‘crucible moment’ of my story. I use a disability parking permit, wheelchairs at airports and places I will need to stand for more than 10 minutes and I have started to advocate for myself and others with invisible disabilities. When I started taking advantage of the services offered for disability in 2018, I was embarrassed. I would be terrified of using my parking permit for fear of being questioned about why I was using a disabled parking spot; I was embarrassed being seen in a wheelchair at the airport; and I didn’t want people in my life to know about my disability. Upon reflection this embarrassment and fear stemmed from community stigma and I am ashamed it took me getting a disability to understand these stigmas.
As a society we have a tendency to avoid uncomfortable conversations. Discussing chronic pain is one of these uncomfortable conversations. I believe this is because chronic pain isn’t visible, so I have started sharing my experience – including the rare crash days I now. I am now comfortable calling out businesses when they engage in disability discrimination and I am working to connect with other young people struggling with their own invisible illness journey through my Instagram account @spooniediscrimination.
Imagine if I, and every other Australian experiencing chronic pain, were to one day show up covered in giant painful looking bruises as a visual representation of our invisible chronic pain, how would you respond?
I can guarantee your response* wouldn’t be:
- Why are you parking in the disabled parking spot?
- It’s not that far, can’t you just walk?
- Aren’t you better yet?
- Have you tried [insert random herb]?
- Look how confident she is taking advantage of pre-boarding.
- But you don’t look sick.
- I must have that too.
- I’m so jealous you get to stay [at home/in bed] all day.
- You should come, it’s just [insert event or activity] and you’ve been [resting all week/we haven’t seen you in ages].
*these are just a handful of the responses I have personally heard. Ask your friend or family member with invisible illness what they have heard.