From Patient to Advocate: Navigating Chronic Illness and Challenging Healthcare Systems - Geni McCallum

Before I got sick I assumed, like most people do, that the medical system was set up to help people heal. I thought that when I called an ambulance it would arrive, that if I had to go to after hours, I would be seen and that if I saw specialists they would find out what was wrong. It turns out that I was wrong and having an unnamed chronic illness causing pain and disability made support nearly impossible to access (Bülow, 2008). Due to these experiences, I am disillusioned and traumatised. Navigating the Kiwi healthcare system is about doing research and advocating so you don’t just get sent home with opiates. A process entrenched by cultural and systemic dynamics within clinical encounters (Dew, Scott, & Kirkman, 2016). In reviewing what I learnt in this course, I will link it to my own experiences. I’ll be using an analysis of the healthcare system and language I never knew how to articulate before I began this course. 

Initially, my understandings of health and illness were limited to anecdotal and personal experiences. I knew a lot about the changes that I’d seen in the last 30 years or so from a layperson’s perspective but I didn’t know how the language and communication of health impacted systems and people. My assumptions had always been that the medical system was only improving due to better technologies and scientific understanding of human bodies. I wasn’t fully cognisant that money and power have always manipulated what and who gets studied and the lenses which control their outcomes (Ioannidis, 2005).

If it’s not life-threatening, or doesn’t directly impact white, cis-men, it’s not going to get as much funding or focus (Ioannidis, 2005). This is reflected in the time it takes to be diagnosed with endometriosis or PCOS (Evans, 2022). This pattern is also clear in the many gender biases within medical treatment (Hamberg, 2008). I was told after multiple ultrasounds that my IUD insertion wasn’t causing me pain for over a year until I finally got to see a gynaecologist who said “Of course it is! Let’s whip it out now”. I was told I didn’t have PCOS because I didn’t have “high enough androgens”. When I moved to Melbourne, my GP did an insulin resistance test and ultrasound. It was clear that I’d been misdiagnosed for years. This has nothing to do with science and everything to do with culture and conditioning which over-legitimise biomedical frameworks in the DSM, despite their limitations and criticisms (Lafrance & McKenzie-Mohr, 2013). This system is focused on treating parts rather than the whole and has more to do with ingrained medical culture than science itself. 

How the Course Concepts Influenced My Perspectives

Social Construction of Illness

Appearance and social perceptions contribute significantly to health assessments, influencing how individuals are diagnosed and treated (Jutel & Buetow, 2007). This further illuminated my realisation that the biases in medical research funding aren’t just against cis-women, but trans, queer, people of colour and disabled people (Bülow, 2008). For instance, Māori cis-women have much lower health outcomes which has often been blamed on them (Cormack & Harris, 2009). Research supports these observations, showing that systemic biases contribute to persistent disparities in Māori health outcomes (Cormack & Harris, 2009). Looking outside of my perspective allowed me to understand that marginalised groups are also being neglected. I may have a hard time being listened to or taken seriously by medical professionals, but if I were a Māori wahine, I’d encounter even more barriers to care, as highlighted by observations of systemic challenges faced by Māori patients in Aotearoa (Masters-Awatere, Cormack, Graham, & Brown, 2020).

Power Dynamics in Medical Interactions

The power dynamics discussed in the course validated my experiences of feeling unheard, reinforced by the way the DSM shapes perceptions of legitimacy in medical practice (Lafrance & McKenzie-Mohr, 2013). In being told my symptoms weren’t important or severe, the doctors used their authority to make me more pliant and easier to manage. This dynamic reflects the broader issue highlighted by Pearl (2022), who discusses how entrenched power imbalances can silence patients and hinder effective communication. The course content on power dynamics affirmed my experiences, showing how power structures in healthcare can silence patients. The diagnosis itself can function as a social and political tool, determining who receives legitimacy and who is just ignored (Jutel, 2021, p. 11).

Person-Centred Care

The emphasis on the patient-centred model of care made me see the potential for improvement and evolution from our current model. Research supports that such models can shift the power balance and increase patient agency (Mead & Bower, 2000). This aligns with Coulter and Oldham’s (2016) argument that person-centred care, which treats patients as equal partners and respects their individual needs and preferences, is essential for effective healthcare. I have had many experiences as a patient when I wasn’t given all of the relevant information for a test or treatment. Particularly when treatment is painful or invasive, there was a brief explanation and no communication of my rights. I’ve never been told that I have the right to stop a procedure or even pause it. It was always implied that I had to withstand extreme pain, make no fuss and be a “good patient”. This meant that when mistakes were made, I didn’t say anything because I was conditioned to suffer silently. 

Reflection on Personal Growth and Insights:

When I started this course I became angry at how so many of us are conditioned not to question the authority of medical staff. I reflected on how low my expectations had become in interacting with these systems. It allowed me some space to realise that all my feelings were valid and that I wasn’t just being difficult. 

We all deserve more than what we’re currently getting. Even now I am struggling to type because the nerves in my arms and hands have seized up. Even now I still don’t have a diagnosis because my condition hasn’t been researched enough. Even now I sometimes doubt whether my pain is even real if it can’t be measured externally. This aligns with research showing the psychological toll chronic pain takes on individuals, leading to challenges in maintaining self-advocacy (Turk & Okifuji, 2002). Even now as I attempt to navigate a culture that doesn’t understand how I can be disabled by an invisible illness. We deserve more than this broken system and people who listen to us and our needs.

I felt I had no power but I’ve begun to say no more and demand better treatment.

Broader Applications and Critical Reflections

People with chronic conditions, need to be organised to get what they need. They need supportive families and friends who will build the toilet frame that ACC sent them to assemble themselves (true story) or just visit them when they can’t leave their houses. Systemic health inequalities are deeply embedded in healthcare structures, requiring comprehensive reforms to ensure equitable access and treatment (Wylie & McConkey, 2019). And most importantly they need to be given as much information as possible so that they can be part of their health journey instead of a powerless bystander. 

A possible improvement would be hiring some patients who had been through treatments, tests, etc. to write the guides of what to expect instead of medical staff. These would address the patient’s concerns and highlight their right to stop procedures and ask questions. Consent is finally being taught in schools, it needs to be taught to patients and more importantly to medical staff. The damaging power imbalance needs to be addressed and ethical consent training should be mandatory.

It’s clear that the current healthcare system isn’t working well for anyone and needs deep systemic change. Real improvement has to begin with a government that prioritises accessible, community-centred healthcare and genuinely listens to those who advocate for it. Without that, nothing will shift. Apathy breeds suffering, and we must push against it. We deserve more than just being treated as a collection of broken parts. As this course has shown, informed communication and empowerment are essential steps toward reclaiming health and trust in the system.

References

Bülow, P. (2008). “You Have to Ask a Little”: Troublesome Storytelling About Contested Illness. In  

Health, Illness and Culture (pp. 23). Routledge.

Cormack, D., & Harris, R. (2009). Issues in Monitoring Māori Health and Inequities. Te Rōpū Rangahau 

Hauora a Eru Pōmare, University of Otago.

Coulter, A., & Oldham, J. (2016). Person-centred care: what is it and how do we get there? Future 

Hospital Journal, 3(2), 114–116. https://doi.org/10.7861/futurehosp.3-2-114

Dew, K., Scott, A., & Kirkman, A. (2016). Health Consumers and the Clinical Encounter. In Social, 

Political and Cultural Dimensions of Health. Springer. https://doi.org/10.1007/978-3-319-31508-9_2

Evans, S. (2022). People with endometriosis and PCOS wait years for a diagnosis – attitudes to women’s 

pain may be to blame. The Conversation. https://theconversation.com/people-with-endometriosis-and-pcos-wait-years-for-a-diagnosis-attitudes-to-womens-pain-may-be-to-blame-179500

Hamberg, K. (2008). Gender bias in medicine. Women’s Health, 4(3), 237–243. 

https://doi.org/10.2217/17455057.4.3.237

Ioannidis, J. P. A. (2005). Why most published research findings are false. PLoS Medicine, 2(8), e124. 

https://doi.org/10.1371/journal.pmed.0020124

Jutel, A. (2021). Diagnosis: A social and political phenomenon. In Routledge International Handbook of 

Critical Issues in Health and Illness (p. 11). Routledge. https://doi.org/10.4324/9781003185215-8

Jutel, A., & Buetow, S. (2007). A picture of health? Unmasking the role of appearance in health. 

Perspectives in Biology and Medicine, 50(3), 421–434.

Lafrance, M. N., & McKenzie-Mohr, S. (2013). The DSM and its lure of legitimacy. Feminism & 

Psychology, 23(1), 119–140. https://doi.org/10.1177/0959353512467974

Masters-Awatere, B., Cormack, D., Graham, R., & Brown, R. (2020). Observations by and conversations 

with health workers and hospital personnel involved in transferring Māori patients and Whānau to Waikato hospital in Aotearoa New Zealand. International Journal of Environmental Research and Public Health, 17(23), 1–13. https://doi.org/10.3390/ijerph17238833

Mead, N., & Bower, P. (2000). Patient-centredness: A conceptual framework and review of the empirical 

literature. Social Science & Medicine, 51(7), 1087–1110. https://doi.org/10.1016/S0277-9536(00)00098-8

Pearl, R. (2022). Breaking the rules of healthcare: The doctor-patient power dynamic. Forbes. Retrieved 

from https://www.forbes.com/sites/robertpearl/2022/04/11/breaking-the-rules-of-healthcare-the-doctor-patient-power-dynamic/

Turk, D. C., & Okifuji, A. (2002). Psychological factors in chronic pain: Evolution and revolution. 

Journal of Consulting and Clinical Psychology, 70(3), 678–690. https://doi.org/10.1037/0022-006X.70.3.678

Wylie, M. C., & McConkey, M. (2019). The structural challenges of health inequities. The Lancet Global 

Health, 7(2), e162–e163. https://doi.org/10.1016/S2214-109X(19)30009-4

Same quiz sixteen years later

Saw this and thought I might update it a mere sixteen years later. You are so welcome (new answers in italics). 

Stole these questions from The Nightwatchman in Dec 2007.

When was the last time you lied?

A few hours ago, when I told myself those eggs were worth eating. 

About 5 mins ago about what I was doing on the intraweb.

When was the last time you used the word hate?

It was definitely the sentence "I hate when... does..." on the last film I watched with Trin, but I sadly don't remember the specifics. 

Today when I told Daniel I hated all boys and he took offense.

What is your most treasured possession?

My new Rothko print. I've wanted one for over 20 years, and I finally got one. 

My iMac, Molly.

Who would play you in the film of your life?

Melanie Lynskey. She has the accent already, and some people think we look alike (which is untrue but super flattering). 

I want Scarlett J, so I'm getting Scarlett J.

What do you owe your parents?

My life. 

So much I don't even know the sum anymore. :(

What keeps you awake at night?

Thinking about things I have no control over but desperately want control over. 

My fucking mind never shuts the hell up.

How would you like to be remembered?

Hopefully, some people miss me. I'd like to make connections that meant something to someone. How they remember me isn't really that important. 

I don't need to be remembered, I wont be here anymore.

What makes you angry?

Not feeling heard or understood and injustice. 

Mostly myself.

What would you like to be your last words on earth?

So long, and thanks for all the fish. 

Cheers.

Which living person do you most admire?

Admire isn't the right word, but I guess I admire people who take risks with things they care about.

I honestly don't know, I don't really admire people much.

What is the trait you most deplore in yourself and others?

Dishonesty. 

Being selfish.

What does love feel like?

Like you're in your own little universe where nothing else matters. Everything, the good and bad, is 100% more intense and impossible to escape. 

Every feeling possible, mixed up into a big pot, boiled and served with cabbage.

What's your greatest extravagance?

My fancy fridge that I love but currently barely use. 

My bloody phone. I take it back, I love you, you are priceless.

Define beauty.

Impossible to ignore and wholly positive. 

Pure and positive.

When were you happiest?

When I fell in love with Hayden and met Trin.

The last time I was riding a high.

What superpower would you like?

Ha. Still invisibility. 

Invisibility.

Favourite smell?

Whoever I'm currently in love with. 

Boys.

What do you consider your greatest achievement?

See below with the addition of being a Mum. 

Still being alive.

Buzz, buzz, buzz

Sometimes I don't feel like I'm inhabiting my body. My mind just buzzes around nonsensically, and wherever I am is not down here. 

I don't mean that in a spiritual sense either, although I do potentially mean it in an energetic sense. That buzzing, that ongoing electricity I sense, is around most of the time. It might be coming from me, or maybe it's just there. With or without me noticing it. 

When I meditate or do yoga, I always keep my palms flat on the earth because when I don't, I feel overstimulated. I have no extra room inside me for more energy, even energy I don't necessarily believe exists. 

Maybe it's anxiety or at least the form of it that I create or recognise. I don't know. 

I'm not even completely sure why I wanted to write about it here. I write plenty of things that I don't write or publish on the blog. 

I guess I suspect these feelings aren't isolated only to me. Perhaps sharing it might make me or someone else feel less lonely. 

Does everyone feel lost a lot of the time? I'm trying to recreate a life for myself after the last one died. Although I was an active participant in its demise, so is it just that my last life was murdered? Probably manslaughter, though, since I don't think we plotted it out beforehand. The most reluctant murder ever. 

Potentially this feeling of loss and lostness is just part and parcel of a rebirth of some kind. Birth is violent and painful and ultimately confusing for all parties involved, so I guess it makes sense. 

I'd like things to be less hard, please. I don't know who I'm addressing that to. Although maybe if I stopped wanting my life to be something it never promised to be, I might feel a bit better about it. 

I don't think it's in me to seek the path of least resistance, but perhaps if I start embracing that, I'll feel less alone too. 

I ate eggs again even though my body violently rejects them. Why am I so comfortable with controlled discomfort and pain and yet actively avoid dealing with any of it on an organic level? I think I know the answer already, so I'll leave this rhetorical. 

Feeling a lot, all the time is exhausting. 

Hopefully, reading it is less so. 

Separating Together

The relationship I've been in for the last 11 years has evolved. Maybe I sound a bit new-age-y (consciously uncoupling?) but as hard as it has been to grieve the change, it has also been freeing, for both of us I think. 

We made some big commitments early on when we were just 24 years old and one of them was that we wouldn't stay together if we were unhappy together. It didn't mean we didn't work through tough times, or that we thought we should always be blindingly in-love forever or else - it just meant we cared enough about each other to promise not to chain ourselves together if it just wasn't working anymore. 

Despite this, the decision took time, it's hard to know when or if to let go. It wasn't some frivolous thing that was easy or made in anger. Once we'd both gotten to that place, I felt both deep sadness and relief. 11 years together, building a life and a family feels like a physical and emotional attachment and slowly dissolving some of those bonds with solvent is difficult to do. It's like a bizarre type of surgery; sometimes you realise you've pulled too quickly and you've inadvertently left wounds or even small scars on each other. But I think we managed to separate ourselves from each other as carefully and with as much love and respect as possible. 

It was during this time that I realised I chose the right person to marry - I know this because even when we chose to untangle ourselves from each other, we cared for each other as friends. It hasn't been pain-free, simple or without mistakes but I think we've both survived so-far because we still love each other. We've really tried our best to do this with eyes wide open the whole way through, even when it fucking hurt. 

We'll both be happier in the long run and we're still a family but we're no longer a couple. I wouldn't change our story and just because it didn't end in one of us dying, it's not a failure. As far as I'm concerned, our marriage was a success because we split up in time to preserve our relationship - tectonic change is seriously painful but we've survived it together. 

Now we're just taking time to heal and figure out what we want our lives to look like apart. 

Duh.

 I read in Frankie magazine that left-handers are predisposed to fear and anxiety...

...yep that tracks. 

Lockdown & Mental Health

We went into self-isolation a week before the government put the country into lockdown. It was pretty obvious that this was the way it was going and once everyone else was home it was a bit of a relief.

So the third week in and my life hasn't significantly changed on the outside. I've been self-employed and working remotely for various clients for almost a year now. I had to make a conscious effort to make time to leave the house regularly, see my family and friends and get some sun in the yard.

I'm used to prioritising my mental health, Cyclothymia doesn't allow for lapses on that front. It's one of the reasons I decided to work for myself - it allows more flexibility to work around my brain chemicals. In fact, the lockdown has made it easier in many ways to regularly exercise, meditate and advocate for regular self-care.

Can you sense the flatness though? I can. My flatness is fucking palpable to me right now.

There have been loads of mental health initiatives over the years, imploring us to talk to people about our feelings. I am completely on board with this. In my case though, sharing my emotions to friends or family isn't usually helpful.

It's not that they're not receptive or loving, it's just that in my case there's nothing that they can do or say to help. It has always felt like I'm just loading heaviness onto someone I love, it doesn't lessen my heaviness, it just makes them feel heavier too. I always regret making them feel a little heavier.

This isn't the case for everyone, but I know what I need to do to move through my depression. Making other people heavier doesn't help me or them and it generally just unnecessarily worries them. I will be okay, I know this because I have eventually moved through every depressive episode I've ever had since I was 19.

Keith (my depression) and I are begrudgingly longterm flatmates at this stage. Most of the time it feels like being carried down a river rapid; my plastic floaties keep my head above the water. Much less frequently it feels like the water has turned to sludge and I need more help to stay afloat, either from my therapist or anti-depressants.

I write this because I'm not the only person feeling flat, perhaps darker than flat right now. I've created a life that is resilient enough to go through these times relatively unscathed. You will need to find the activities and support that will do the same for you.

I'm here if you need me. I will be okay and you will be too.

Binge Eating

Binge eating is the compulsive act of over-eating, I would call it an addiction. I don't use the word 'addiction' lightly, as I'm well aware it has the capacity to ruin lives. I'm lucky (?) to have never been addicted to drugs, alcohol etc. but I was addicted to food. I know this because I sought it to self-medicate. I used it as a tool that it was never intended to be.

Imagine trying to unlock a door with a noodle and doing it over and over and over again for the majority of your adult life. Addictions are in their very simplest forms, trying to fix your feelings with a substance that isn't capable of fixing anything.

People with addictions are fearful, we run from our feelings and we run so hard and for so long that we forget which feelings we are afraid of. All we know is that ANYTHING is better/less terrifying than those feelings. And unless you've felt that paralysing fear, you won't really understand how powerful it is. I once pushed a needle through my grown-over labret piercing just to not feel my feelings. It really fucking hurt. Pain is sometimes preferable to feelings.

I feel like I should also mention the obvious; that addiction to heroin is not the same as one to food as it isn't physically addictive. Although there have been some studies done on the effect of sugar on the brain, I don't think that what I went through is on the same level.

I would now consider myself a recovering binge eater. It took me about 25 years to get here and I genuinely thought I never would. I'd tried Overeaters Anonymous (OA) a handful of times but never really committed to having a Sponsor. I had tried all the diets, all the versions of restriction - just everything. I was fucking exhausted. My eating disorder took up 95% of all of my thoughts, I was always thinking about food. I was thinking about how to get it, fighting with myself about when I ate 'unhealthy foods', feeling guilty and obsessing over it constantly. I would steal food from my family, hide and steal money from my partner and inhale junk food in my car on the side of the road so that no one could see me. I would eat so much food that it was physically painful, wait till I could eat again and then eat some more. There was no pleasure in food, I was just trying to figure out how to get more of it, without anyone noticing, all day, every day. It was my biggest shame and I was completely conscious, silently screaming at myself to stop and being incapable of doing so.

I'd love to write that I found the 'fix' that everyone could use to recover but I just don't think it exists. I ended up on the brink of completely imploding my own life. I was totally broken. So I gave up. I stopped fighting and trying to figure out how to 'fix' myself and let go. I let go of my ego enough to ignore the cheesy and religious side of OA, and began working the steps. I didn't go to many physical meetings but I did go to online ones and I found myself a sponsor who lives in the U.S and I began talking to her regularly.

She guided me through the steps and I slowly began to navigate a way through them that I was comfortable with. I'm an Athiest and OA is not, so it was tricky but not impossible. I read The Big Book, which is pretty old-fashioned (it was written by a white man back in the day) and I chose to ignore the sexism and find the intention behind the differences in values. Not easy.

I've since been asked by a few people about how I got through OA as an Athiest. I now direct them to Russell Brand's book 'Recovery'. It takes you through each step of AA with thoughtfulness, humour and most importantly without the religious dogma that puts so many of us off. I wish I'd done my programme with that book but my Sponsor was my Russell Brand and she was amazing.

I worked the steps, I took my time and I tried to be kind to myself. It took me quite a few months but I still remember the day I realised I hadn't thought about food. I was driving in my car and it suddenly hit me. I was so happy and shocked that I had to pull my car over and rang my sister in Melbourne to tell her. She is a recovering Anorexic so has an implicit understanding of the importance of such moments that no one else in my life has. Her support and understanding has been more than important to me - no one is less judgemental than someone who is a recovering - insert eating disorder here -. 

Those moments grew from there and I haven't binge eaten in a very long time. I chose not to count my days of sobriety, mainly through fear of failure. But honestly, it doesn't matter to me how long it has been. It doesn't mean that I'm skinny or eat super healthily all the time either. All that really matters to me is that my every living moment isn't filled with that shitty voice anymore. I don't think about food constantly and I feel like a huge burden has finally been lifted from my shoulders. I found my recovery when I learnt how to stop fighting with myself, and slowly let myself feel what I was so afraid of.