Otago University Long Covid Symposium — keynote speech
The below is the transcript of my speech on 25th May 2022. Video of the event & session can be found here
Over the past two years I’ve found myself in a peculiar position as one of the faces of Covid in Aotearoa. Recently, I travelled the world for work and realised how unusual my experience during this pandemic has been.
It has both been the most challenging journey on a personal health front, but also one of the greatest honours of my life. I could never have predicted this would be my area of expertise or that I would stand alongside many incredibly well educated and experienced medical professionals to play a part in our pandemic response. I do believe that every individual can play a role and this one has been mine, however discombobulating and terrifying that has been at times.
As a career entrepreneur, my years of media training and story telling experience have become incredibly useful, it is not unusual for me to have to convey big ideas and convince people to back and support the under dog. In some ways, being an advocate and supporter for those with Long Covid makes sense to me, however, I believe what I have mostly called upon is my empathy — and that has been borne of personal experience. I believe that relatability is core to enabling people to feel comfortable, to feel heard and be seen when sharing their painful journey’s. It is a daily practice of being open minded and capable of embracing the many facets that are continually evolving with Long Covid.
It is the most researched subject, the most feared for, debated, gas lit and open to enormous amounts of conjecture and conspiracy. It is many things all at the same time, yet none of them are easy to pinpoint or fix, it doesn’t stay still, it morphs and renders many lives shattered and destroyed. It breaks hearts, bodies, minds and families.
The Long Covid Aotearoa Support Group that I belong to is administered by a half dozen group of patients who want to help others. These fellow empathetic people are doing their best with what they have, which is not much. It is in the truest sense, a motley crew. We are not trained social media administrators, most have not had experience in chronic conditions, disease or any other form of medicine — and yet we find ourselves helping provide answers on these subjects and more — including employment, benefits and finances — for the thousands of people finding themselves unwell long after everyone else around them has largely “recovered”.
Ah, there goes that word again. I’m going to let you in on a little secret. For a long time there, as the daily 1pm pressers were held by the ministry, we would hear that little word used to describe those who were no longer infectious. It became an afront over time, 9 little letters causing great upset amongst my peers. It didn’t make room for what our experience was, it was the beginning of what for many felt like years of gas lightining. It left no room or made no space for those who simply hadn’t done what was being suggested. We had not recovered.
My personal journey echoes many. With a somewhat “mild” initial Covid infection (though I did land in hospital for 3 days), it took the fairly typical six + weeks to recover immediately — that much I expected, especially after how hard it hit me.
What I didn’t know, which now feels naive at best and negligent if intelligently inspected, was that I would have weakened immune system and that due to a number of factors (previous EBV, endometriosis, high stress life with maxed out adrenals), including a surgery not long after, the risk for a post viral syndrome was high. There was no warning, I did not know this and I did my usual over achieving best to get back on track ASAP and take back my life that Covid had been trying to take from me.
In the end, Covid won and I lost 13 kgs from an inabilty to stomach food without triggering some kind of allergic reaction, brain fog so intense I wondered if I had early onset dementia, joints so painful when I stood that felt like glass was in them, but they competed with the near constant dizziness that came with standing. I permanently lost my smell.
My body raged with inflammation, my solo remaining ovary grew persisent cysts, my bowels were covered in polyps and the fatigue felt like my battery pack had been permanently removed. I had no ability to work, exercise, or socialise, to lead my business or my team and with the 19 varied symptoms that flared on and off persistently for the first year, I found myself also in menopause, depressed and incredibly frustrated at the lack of care I was shown by so many professionals.
I craved to hear the words “I’m sorry we don’t know what is happening, but we’ll try our best to help you” rather than “your tests are all normal”.
Because of the lack of treatments and options provided, I had no choice but to turn to alternative medicine. I invested thousands of dollars in alternative therapies, exclusionary diets, supplements, coaching. If you’d suggested spicy frogs legs taken under a full moon might heal me, I may have considered it — desperate times create open minds, especially when faced with continuous gas lighting.
After one particular incident where I was raced to hospital via ambulance, with a crashing blood pressure, dangerously low sodium & potassium levels and soaring heart rate, the emergency room doctor suggested that it might be simply “anxiety”. It sure was making me anxious not being believed, I can tell you that.
That day I vowed to myself, as I held onto either side of the hospital bathroom sink, eye balling myself in the mirror — I declared “you are not leaving this place until you get some answers”. The level of self advocacy required when at my most sickest, was beyond any kind of strength that I knew that I would ever have to muster, I dug deep and challenged myself to be heard and to be seen, and to not apologise for wasting time, and to not retreat and take up psychological assistance.
There are things that I have learnt that I often share. The first one is that we are often led to believe that if it’s in our head that it must be something that we can control. What I now understand is that my neuropathways were not operating as usual, that things were going haywire, that messages were being mixed and overloaded.
I now know that there was a physical over reaction, but it was not something I had control over. It is too much to expect an every day person to understand how to calm the central nervous system down — they are not taught this nor should they know where to start. The suggestion, therefore, that it’s psychological is dangerous and builds upon the idea that Long Covid is avoidable if you just have your shit together.
Every day new members join our group. You can tell that they are being afronted by the very same things that the founding members discovered much earlier in the pandemic. I often think of them like cartoon characters walking along, falling off the cliff unaware that it was even there. Although, it is not at all comical. It is both an exercise in repetitive trauma for those who are witnessing people fall down the very same cliff they also descended, and utter frustration that still no warning signs are being mounted. It is heart breaking.
One of the things I personally vowed to do was to advocate for those who couldn’t. I was very aware of my privilege, access and unique situation. I had a trained voice, unafraid of stepping up and forward and could largely handle the ramifications (of which there have been plenty, online bullying and stigma are incredibly horrifying and unexpected symptoms of Covid and Long Covid in Aotearoa).
It felt unjust that I was struggling to live any kind of life at all, with all the resources I had at my finger tips, and it was unimaginable how those who were also suffering like me, but with the additions of holding down jobs, struggling to feed families, look after little kids and extended whānau and other challenging factors from mental illness and disabilities. I became aware of my previously ableist mindset and I was determined to no longer live so naively again, I now knew better and was going to do better.
You’ll hear from many people today who we coordinate with, who are actively seeking to find answers, offering solutions, improving lives, identifying ways to resolve the toughest of challenges. It is thankless, relentless, confronting, frustrating and sometimes even a little bit boring. Not in the ‘oh i’ve got better things I’d rather be doing’ kind of boring, but in the ‘how are we still having this same conversation again’ varietal.
I have no doubt that we collectively have had a lot on our plates handling the triage end of the pandemic health response, but not making time to look ahead to the ‘what next’ given what was previously known about post viral syndromes and the impacts it would likely have on a large % of our population, young and old, it has felt….remiss.
I offer that word up not as criticism, I have been an advocate and supporter largely across our pandemic response. But I have felt lonely, as others have, standing up, exposed, and crying out for help. This pandemic has both hardened and softened me in equal measure.
I will never be the same person again that I was before March 2020. Some days I grieve that quietly, and others I grow more determined to not let it define my future — even if so much is still yet unknown. I feel gratitude for fortitude and where ever I was lucky enough to obtain it from or continue to get access to it.
There is a saying within our group that goes “I spend half of my time convincing other people that LC is real, and the other half convincing myself that it isn’t”.
We walk a thin daily line of optimism and we seek each other out for support, offer it up to our newbies and hope that one day we’ll be able to give them better news than “no, there is currently no official advice. It is unlikey your GP has much experience with us. It is going to be difficult if not impossible to see a specialist. There is no financial aid, your employer may not be able to support you either. We do not have the answers you seek and most discouragingly, we don’t have a magic silver bullet to make you feel immediately better.”
Instant gratification doesn’t exist when it comes to Long Covid, it is a realm where the patient learns the true meaning of the word. A world where less is more, simplifying is your only option and the only way to guarantee safe passage is to be financially stable and capable of handling the reality of a long slow recovery.
That is not the Aotearoa that I know. That is not who we are or at least not who we should be. Getting well from Covid should not be associated to where you are born, how much income you have or what colour your skin in. Statistically speaking, Māori and Pasifika are going to be more impacted than any other group — we are creating another generation of systemically negatively impacted inequality.
History tells us that this doesn’t resolve itself quickly, it will prolong and carry through into every corner of life, community, whānau and will have physical, mental, emotional, spiritual and financial implications. Every factor already facing our most at risk populations will be expotentially increased from access to care, education and housing. They are and will continue to be marginalised and left behind unless urgent action is taken.
He tangata. He tangata. He tangata.
These must not be merely words we use, but actions that we live by. A year ago as I stood in front of the hospital mirror, I vowed that I would not wait for the government to come to the rescue and I would do all I could to help as many people I could for as long as I was capable.
I’ve kept that promise. But the load is becoming too much, and we need your help too. It is time for the collective strategic response to step in, to lead the way out of this. Every individual in the room today can play a part and I ask you to. I implore you. I beg of you.
It will require us doing more, going over and above what our job descriptions are. I feel like going from tech founder to Covid support advocate was a large pivot, and so I have faith those who are here in this room are far better positioned, with stronger networks, greater experience and a lot more education than this high school drop out.
Collectively you hold the keys that can turn into answers. It starts today and it starts right now as you lead with lived experience. I want to thank you, Rob, for making room for us, for setting the tone by bringing us to the front of this agenda. And I ask each of you to follow that leadership shown, by showing up with open palms and open minds willing to listen to those who are the most impacted and asking them simply “How can I help?”
Here is what we want:
- Ask more questions when you don’t have the answers
- Include the lived experience at every turn
- Build equitable resources that are accessible to all
- MoH criteria for long covid diagnosis and supporting documentation/resources for General Practitioners in their evaluation of potential long covid patients. Empower our GP networks by acknowledging that LC is multi facted and varied, making it tricky to diagnose
- Referral criteria for specialist care and clear support pathways
- Supporting guidelines, educational materials, and resources for specialist care givers (e.g. cardiologists, pulmonologists, etc) in the management of long covid conditions
- Commitment to start planning for and answering questions regarding the long-term care and support of long covid patients including but not limited to: work-safe policies, extended leave of absence for covid related illness, workplace accommodations, income support, and physical in-home care, sick leave
- Clear comms across all departments — Ministry of Education, Social Development, Disability, WINZ, ACC, MBIE and to business re workplace policies
- Commitment to start establishing the pipeline of patients from GP to specialist care including the establishment of localised experts in the field and/or clinics
- Fund & establish Long Covid clinics to support the full journey of every patient in some way — be it a short or long time, high needs or low touch. Ensure all are seen and assessed — including the implications on their life, not just their health
- Take a needs-based assessment approach (rather than the triage-based approach being trialled in the UK). Collaborate globally with other responses to listen and learn from what has and hasn’t worked
- Fund research to support greater knowledge
- Support group admin resources
