I have lived my entire life with chronic pain but at a certain point I stopped talking about it. Until recently, most friends could tell you my top three Kelly Clarkson songs but not that I have arthritis in my elbows and ankle from years of internal bleeding. I have built a version of myself that hides my illness, even from those I love most.
Today is World Haemophilia Day; I am a person with severe haemophilia and I have decided to break my own silence. I want to show other people with hidden pain, disability or illness that there is power in vulnerability and you are enough just as you are.
A kid in adult’s clothes
On January 1st 2019, at midday, I lost my voice and didn’t get it back for three weeks. I didn’t feel unwell and I hadn’t gone out partying for New Year’s Eve; I simply got laryngitis and off it went. Unlucky. In those same first weeks, an old ankle injury flared up and impaired my ability to walk. It had never been that bad before, nor that painful. So, with no choice but to wait them both out, I began the new year mute and in pain.
In the first week, I viewed it as a test of resilience, a beautiful metaphor to start the year. In the second week, my headspace bled from frustrated to overwhelmed. My career involves speaking; I talk to patients, I deliver workshops and speeches! Who am I without a voice? More than that, people began to notice that I was walking with a limp and I was running out of energy to deflect their concern. Who am I without mobility?
By the third week, I couldn’t believe how many cracks I’d begun to see in myself. I found it hard to empathise with patients. I snapped at my partner. I was tired all the time and consumed more white wine than I care to remember. Wasn’t I stronger than this? Why was this pain different to all the pain before it?
In the middle of January, I came across a post on Instagram for the Starlight Super Swim, a campaign to raise money for the Starlight Children’s Foundation Australia. In 30 days, you set yourself two targets; a distance to swim and an amount of money to fundraise.
Whether it was fate or targeted advertising, it came at the right time. This was why my year had started this way; a chance to show myself how far I’d come. When I was a kid I spent a fair bit of time in hospital. Sometimes this was as simple as a trip to pick up medication. Other times it was late night visits to the emergency department; I had tricky veins as a kid and my parents couldn’t always get them. I remember one particularly terrible time being held tightly by my parents as the nurse put a needle in my foot to get the vein. And sometimes they were hospital stays that lasted two weeks or more; a bleed in my elbow that wouldn’t resolve without a continuous infusion or a surgery on that same elbow.
For me, being a kid who experienced illness and injury was a lot like playing dress-up in adult clothes; the stress and language and decisions are too big for you but you wear them anyway and pretend it’s normal. It is normal, it’s your reality. When I reached a certain age though I realised that this wasn’t everyone’s reality. Not everyone needs to do intravenous needles 3-4 times a week, not everyone spontaneously bleeds into joints, not everyone has to restrict themselves from certain activities, and so many more minute differences.
Pain, illness, injury, these are all words that are loaded with stigma. As I got older I feared being labelled as my illness. Even with the incredibly wonderful family I have, who did everything to care for and empower me, that shame crept in. Beyond that, spending your life navigating a complex health system is exhausting. Answering questions and engaging with pain is exhausting. I empathise with every person who has to routinely visit healthcare providers. So I began to hide my illness and my pain; I became the most functional, impressive poster-person for haemophilia that you could imagine. (Literally, I have actually been put on a poster).
(At this point I want to reinforce that this story is my experience with haemophilia, pain and chronic illness but does not apply to everybody who lives with one or all of those things!)
Amidst all of this, the Starlight Express Room was an absolute sanctuary for me. It is a place that is created as a “medical free haven” for sick kids and their families. It is bright and colourful, full of games and art and laughter. I remember vividly playing video games against my brother and participating in the daily quiz. It is one of many amazing services the Starlight Foundation offers. Now I could give back.
That being said, I was nervous. I am not someone who has ever set ambitious fitness goals because I always worried that my body would let me down or pain would hold me back. But that was the old Robbie; a weaker Robbie. The new me would take this moment of difficulty and channel it into something to achieve. I would win at trauma.
So I signed up and set my targets. 30 days, 50km, $5000. A simple tagline for a classic inspirational story.
With the power of hindsight, I’m not sure why I set such a high swimming target. In summer I usually swim 1-2km a week but now I was committing to swimming almost 12km. Ego played a part, but so did hope. Somewhere deep down I hoped I was the version of myself I had spent years cultivating; powerful, physical.
When the swimming challenge began, January 26th, my ankle had recovered and I had a voice. I started with a 2.5km ocean swim, the longest distance I had ever swum, and I nailed it. I regularly posted to social media about how well I was doing, how far I had come. I was a sick kid, I am a well adult (e.g. look at my shiny costume).
After the first two weeks, I realised that this goal was much bigger than I had first thought and I was slipping behind my targets. Everyone told me it didn’t matter, that I wasn’t doing it for me, I was doing it for charity. ‘Of course,’ I agreed, ‘I know that.’ (Spoiler alert: I didn’t really know that).
First things first, I had to swim more. I stopped making plans, cancelled plans I already had and devoted myself to the pool. The next strategy was to amp up the fundraising. I became more and more candid in my posts. No memory was too precious or personal if it meant hitting that target.
Ultimately though, my body began to suffer. I developed a huge haematoma between the toes of my left foot that wouldn’t go away; it ached constantly. I tripped on some rocks at the beach and cut my shin open, but I kept swimming and wouldn’t let it heal (it’s now a discoloured scar I’ll have forever). My hands started regularly cramping and swelling in the water. Still, I swam.
It wasn’t just my body that started to give out. I didn’t think about the consequence of sharing all this trauma, most of which I have never really engaged with let alone shared with others. I realised too late that I was opening deep, old wounds. I became quiet, which is shocking for anyone who knows me. I became teary, which is also unusual for me. I’d draft a post for Instagram on the bus to work and not realise I was full blown ugly crying. I felt, quite literally, like I was unravelling.
People were genuinely surprised to hear my story, even those who knew I had haemophilia. I post photos at the gym, I go hiking, I work all the time, I speak at international conferences, I look so healthy; how could I be in pain? I had done so well at building a version of myself that was hyper-functional and stoic that it was shocking for people to learn what I had been through and what I am still going through. I couldn’t compartmentalise these memories anymore because now people would ask me about them. I had put back on those same ‘adult clothes’ I wore as a child only now I realised I had never taken them off, only covered them with more layers. I would say something generic and encouraging when the truth is I have so much fear about the future. There are days when my body aches so much I feel a lot older than my age; what will happen when I’m actually older?
The Super Swim ended on February 24th. That day I swam 4.5kms without stopping, after having swum 3km the day before and 3km the day before that. I didn’t reach 50km. I pulled myself from the pool, completely wrecked. My partner and one of my oldest friends met me for lunch at the pool and I cried into my veggie burger. They comforted me at the most raw and exposed moment I can remember having in my adult life. They told me I had done enough.
In the end, I swam 38.6km and raised $5020. I was the second highest solo fundraiser; I helped 128 sick kids get access to Starlight Foundation programs. I think of this and I swell with pride and joy. Starlight Children’s Foundation is a wonderful organisation that gives sick kids and their families hope, respite and a safe space. I think of children with bleeding disorders like mine accessing their programs and I beam.
Of course, the swim ended but everything that came up did not. What was I supposed to do now that I had opened Pandora’s Box? I couldn’t hide anymore but I also felt so beaten down from exposing myself. How do I find the balance?
What The Water Taught Me
I have spent the last 6 weeks reflecting on this question, and so many others, both by myself and with those around me. Today I am ready to stop hiding.
Firstly, I have made a promise to begin truly engaging with my haemophilia. I have made this promise to myself and to my loved ones. I will give honest answers when asked about my health. I will use the platform I have as a public speaker to share my story, like I am doing now, in the hope that it dispels stigma about illness and disability. Importantly I will learn to do this in a way that doesn’t cause me harm or give too much of myself away. This will be a process, I will make mistakes, but I’m committed to trying.
The next thing I am going to do is start talking about this with a trained mental health professional. As a nurse, I can be guilty of thinking I have all the answers, or that my issues don’t warrant care. That’s detrimental altruism; I need someone to hold the space for me and teach me about trauma, pain and how to exist with those facts of life. There is no shame in seeking help and I would encourage everybody who is facing adversity to talk to a doctor, nurse, psychologist, psychiatrist, counsellor, peer-support worker - whoever is right for you. I will be a better nurse for truly being able to advocate self-care.
Finally, I am going to keep active because I love my body, not because I fear it. This will be easier said than done. When the swim ended, I took a break from the pool. Two weeks later, when I went back to the water, I thought it would embrace me like an old friend. I imagined diving in and moving easily. I would feel calm to be reunited with the water, free from counting kilometres, and also powerful for how far I’d come.
Instead, it was the opposite. I felt heavy, moved awkwardly. I was full of cement trying to swim through sand. Somehow, even with everything that came up in the previous month, this was the hardest moment yet. Had I not endured in order to emerge? No. What I learned in that moment of struggling up and down the lane was that I’d only just slipped beneath the surface of my journey.
What does it mean to be an unwell child? What does it mean to experience any trauma as a child and when does that end? Does it? For me, I have spent a lot of time distancing myself from the past. That was one story and this is another; they’re not related. Even in moments when injury, pain or bleeding have been an issue in adulthood, and there have been plenty, I have coped by enduring quietly because my trauma had a time-stamp.
Of course, that’s not how trauma works. As a nurse who has worked with a diverse presentation of health-related trauma, I know this. More to the point, I know this because I still have haemophilia. I think about it every day and it impacts my choices in so many minute, unconscious ways. They could find a cure for haemophilia tomorrow, which may not be far off, but I would still have residual arthritis and pain left over from years of internal bleeding.
I have learned that there isn’t really any such thing as ‘then and now.’ When you experience trauma it imprints on your DNA. That’s not to say it means your life will be dictated by that trauma, nor does it justify choices that are harmful to yourself and others. What it means is that running from your trauma is the embodiment of shame and fear. When you live this way you can’t truly connect to other people or learn all the parts of who you really are. When you start shining a light on those dark places you will discover strength and resilience and individuality. You will realise that you are still the person you always were but even more so because you are finally moving forward.
I was surprised that people weren’t more concerned when they saw I was in pain in January but I know now that I don’t allow people to be concerned. A good friend told me that when I show up to dinner with a limp, or a bandage, she feels like she can’t ask about it because of how dismissive I am. This broke my heart. I thought I was protecting those around me from my pain but really I was carving out distance because I have shame around my illness. Even look at my language choice: when I referred to ‘an old ankle injury' I’m really referring to arthritis resulting from years of internal bleeding episodes. Is it more dignified to be injured than ill? Are these words even useful?
This story is a light for those who understand what it’s like to hide parts of yourself from the world. I know that place, I live there, and although it is scary and hard to show yourself that light and freedom is something you deserve. It’s also a love-letter to the people in my life. I am who I am because of how you care for me; I hope this brings us closer together.
I would like to finish this story by expressing immense gratitude for the sheer luck and privilege of living in Australia. Not every person with haemophilia has access to the incredible quality of care that I do, including prophylactic treatment at no cost to me or my family. This is even more true being born when I was; people living with haemophilia prior to artificial blood products and prophylactic treatment had to endure more than I ever have, including lengthy and regular blood transfusions, the potential ramifications of that, and a more rapid progression of arthritis. I also have an incredibly supportive family who have loved and nurtured me always. This is their journey as well as mine and I could write another story dedicated to all the ways they’ve held me up. Even with what I have experienced I recognise my privilege and am grateful, and I also recognise that this is my experience with haemophilia and doesn’t necessarily apply to others.
2019 started in silence but will end in a roar. I will continue my journey in small steps and learn how to truly thrive with my chronic illness. I will advocate for those who don’t feel like they can speak out. Fear and shame are nasty, forceful emotions but they are not as powerful as vulnerability and hope. That’s what the water taught me.
Happy World Haemophilia Day <3
For anyone who has read this and needs to talk about any related issues, please talk to your local GP and consider a referral to a mental health professional, and/or contact:
Lifeline: 13 11 14
Kid’s Help Line: 1800 55 1800