Trying to turn painful memories into a more hopeful future
Coming Soon: The Running Rare Health Fund in Partnership with Hands Across Canberra
Over the past few days I’ve had two painful memories playing vividly in my mind. I’ve tried my best to move on from them, but they have persisted. Rather than struggle against them any longer, I have decided to write about them for the first time. The reason for this is because they provide clarity to why I am partnering with Hands Across Canberra to establish the Running Rare Health Fund. The goal of this community driven fund is to support Canberrans living with rare or undiagnosed diseases. I will provide more specific details about the fund in following letters. For now, I would like to concentrate on why these memories motivated me to pursue setting up this fund.
The first memory
It is 2016 and I’m in a local pool about to burst into tears.
The exact month alludes me, as do several specific details, but I am endeavouring to recall and transcribe this memory as faithfully as possible. At this point I had been extremely sick for several months. My body ravaged by a disease I had never heard of just six months prior. The side-effects of the medications I had been prescribed at times felt worse than the debilitating symptoms of the disease I was fighting. A far too common utterance of the chronically ill. I had lost considerable weight and muscle mass; to the point that walking on hard-surfaces was too painful to endure. It felt like the force of each step ricochetted up my leg and into my knees and hips. To try and slow down the muscle deterioration my mum had taken me to the local pool. I was nervous. Being immune-suppressed but needing to do hydro-therapy at a public pool seemed like a dangerous roulette. A plain and profound example that everything comes at a cost and everything comes with risk. But it was better than being at home. It was better to be around people, and it was definitely better than my only other weekly outings to pathology or a specialists’ appointment. You know things are grim when an outing involves repeatedly facing your fear of needles to have your blood tested and then visiting your specialist only to be told that treatment isn’t working.
So there I was, in a public pool walking slowly up and down the lane on the verge of bursting into uncontrollable sobbing. I was finally around other people, but I wanted to desperately be seen. I wanted to talk to someone. To engage. To feel human. But I was so afraid to talk to anyone. After being isolated for so long, I felt out of rhythm and out-of-step. I wanted for all of this to end. The pain, the uncertainty and the horrendous sickness. It was a complex and overwhelming tangle of emotion. I was at a breaking point. I was 22 and normalcy had become being horrendously sick from medication, living in a body that was deteriorating in-front of me and being the most physically isolated I had ever been in my life. It had been a personal lockdown that had already lasted several months and there was no end in sight and no guarantee that there would be an end.
The second memory
The second memory is more vague, as it is not of a specific event but a feeling of being lost since my diagnosis. Living with an ultra-rare disease that affects between 1 in 100,000 to 1 in 1,000,000 is lonely. For my specific condition I am not aware of any dedicated advocacy or support organisations here in Australia, and there is limited organisations in other countries. As a consequence it can feel like you’re left to try and make sense of an unknown path somewhat blindfolded. Compounding this feeling is my experience of many medical professions having limited understanding of my condition, and who can blame them. The Australian medical system is good, and it is improving, but it is being pushed to the brink. Additionally, from my understanding of the Australian legislation it doesn’t know how to deal with rare diseases well - again it improving but real and significant change could be decades away if not longer. The consequence is that many people living with a rare disease either receive poorer care than those with similar but more common conditions or end up slipping through the cracks completely.
Living in the Grey-Zone
A few months ago Matt Breen, of
, lent me the book The Art of Logic by Eugenia Cheng. In one section of the book, Eugenia discusses the difficulty with dealing with grey-zones. Eugenia describes the grey-zone as being the area where something doesn’t fit into a convenient binary description (such as hot or cold or night and day). Dealing with the middle is difficult - for example how do we describe when cold ends and luke-warm starts? Where and, more importantly, how do we draw the line? This difficulty really resonated with me.Applying this to my life
When applying this to my own life I would describe myself as currently not being sick. However, in saying this, I wouldn’t describe myself as healthy either. On the spectrum of health, I am far closer to sick than healthy. But how do you articulate this in a comprehendible way to others? Furthermore, there is another grey-zone at play between the symptoms of my condition and mental health issues such as depression. Often there is overlap between these and understanding what is Still’s Disease and what is Depression and what is a consequence of medications is very difficult to distinguish.
Simply put, living in these grey-zones is confusing and exhausting.
Extending this example further to the chronically ill in general — individuals often don’t qualify for supports or considerations afforded to the ‘sick’ because they’re not sick enough. Equally, they are often not well enough to look after themselves independently. As a consequence, they end up in another grey-area limbo between a total collapse and being able to experience more stable lives.
One step
Running Rare forces me to spend time reflecting on this pain and difficult experiences. But I desperately want to turn this pain into a more hopeful future. To learn from these experiences and to hopefully share a stepping stone for someone else. It reminds me of the parable of a man walking down a beach after a powerful storm. The beach was littered with washed up starfish. Overwhelmed by the sheer number of starfish needing support, he contemplated turning around and heading home. But a voice told him to take a step forward and to kneel down and throw just one starfish back into the ocean.
“That wasn’t so hard”, he thought to himself. So he knelt down again and returned another. And then another.
Somebody on the hill above the beach saw the man throwing the starfish back into the ocean and called out gruffly,
“You’ll never be able to save them all, give up and go home”.
Softly, while placing another starfish into the ocean, the man responded
“No, but I can make a difference to this one”.
The face of the man on the hill began to soften. He took a step forward, and picked up a starfish of his own and joined the man. One starfish at a time.
The need of the rare disease community is like that beach. There is need everywhere you look and it is overwhelming to know where to start. I feel so ill-equipped. There are some beached whales I’ll never be able to return to the ocean. But there are few starfish I reckon I can manage. So I’m endeavouring to do what I can because I have been inspired by those who have gone before me. Just like the man on the beach this task won’t be completed by an individual, but I am hopeful that Running Rare might inspire more people to do something within their realm of influence. Maybe together we can get a few of those whales back into the ocean. I know that the The Hands Across Canberra Running Rare Health Fund will not solve every problem, not even close. But it is one thing that we can do as a community to support those living with rare or undiagnosed diseases in Canberra. I hope that you will consider how you might be able to help.
What can you do to help?
Brainstorm ideas in the comments below about:
How to better raise awareness of rare diseases
Provide feedback on the content you find most helpful, or ideas of any topics you’d like the Running Rare newsletter to cover
Share the Running Rare Newsletter with your network
Do you have a skillset or contact that might be able to help me learn more about advocacy, legislation or research?
Consider supporting the Hands Across Canberra Running Rare Fund when it is officially launched on Rare Disease Day (end of February).
Maybe there are things completely off my radar that I need to know about, please let me know!
I know what you mean about the grey and I think brain struggles to consider that life isn't binary because it is wired to simplify complex information and make quick decisions, which often leads to a tendency to think in black and white. But creating time to slow down and gather all the data needed to consider the grey is challenging, but not impossible.
Great stuff and will have more of a think about how I could help, but what first comes to mind is for you to write more and to copy-paste it to Twitter or a LinkedIn newsletter to get this important message out there in front of more eyeballs!
I think one of the hardest battles and my experience is mostly in dealing with chronic pain, but many diseases are similar the symptoms are often felt and not seen. It's awesome that you writing about it so people can understand it and others better. It's the whole "but you don't look sick". If there is no physical sign of illness/injury then everything is fine and in my clinical experience that is what makes living with it hard.