On Being the Unhelped Unwell

I used to think that doctors were helpful to the unwell. However since becoming chronically crappy I’ve discovered that doctors are often unhelpful; repeatedly and systematically unhelpful. I don’t believe that this occurs because doctors are uncaring jerks, but because of the structure of western medicine and the training provided to doctors.

Western medicine is based on the assumption that all “real” conditions have been validated by research and assigned a diagnostic label. “Real” conditions are believed to respond to treatment in a predictable manner. Western medicine considers anything else to be…well just not a real medical thing – perhaps the patient is faking, exaggerating, confused or mentally unwell? Doctors struggle to help patients with unmedical things.

When Unmedical Things Happen

In reality, neither medical practice nor science are all-knowing or infallible. Many diseases are difficult to detect (like my Addison’s Disease which required specialised testing), and/or are easily overlooked (this applies to pretty much all rare diseases).

Other conditions have not attracted sufficient research funding in order to have been properly defined, or defy investigation by our current level of knowledge and technology. Chronic fatigue syndrome is the textbook example, where sexism, classism and social stigma have prevented the syndrome from receiving research funding and therefore legitimisation within the medical system.

What happens when you experience a not-yet-diagnosed or not-yet-discovered condition? In my case, I spent 10 years trying to get help for what later turned out to be a rare life-threatening autoimmune disease. I saw at least 6 different doctors who each ran a similar battery of blood tests and bodily inspections. When the tests came back normal, I was told nothing was wrong and offered no treatment. Not just no treatment; no helpful support or advice either. I was simply turned away from the medical system to deal with my worsening symptoms alone.

After a decade of languishing outside of the medical system, my symptoms were eventually labelled as being “Addison’s Disease” and “Hashimoto’s Disease”. I had finally earned my ticket to ride the medical-go-round. I was initially showered with attention from doctors and nurses, granted an audience with an almighty specialist, given medications and provided with advice on how to manage symptoms that I’d been living with for years.

I was told that I’d take one pill a day and all of my symptoms would be gone. Unfortunately this did not happen for me. “I feel sicker and I have new symptoms,” I told my specialist. “You should be better”, he responded, “everyone else feels better on this treatment.” My body was behaving unmedically. My doctors again began offering unhelp.

Common Forms of Medical Unhelp

Perhaps you’d expect that medical unhelp (help that is unhelpful or non-existent) was haphazard – the random musings of a floundering doctor. Actually it’s surprisingly systematic. The lack of help provided by my doctors over the past 15 years seemed to come from the same textbook of Medical Unhelp 101. I envisage that these would be the strategies contained therein.

1. Reassurance-Giving

This was often “I can’t find anything wrong with you”, “your blood tests are all normal” or the sexist version – “you certaintly look healthy” (as my male doctor’s eyes glance up and down my body and then settle on my eyes with a cheeky expression).

Sometimes doctors offered a vague explanation for my symptoms like “perhaps you are doing too much and need to slow down”, or the sexist version – “many women take on too much”. Given that I’d already slowed my life down to accommodate my growing symptoms, this help was useless.

After a few years, reassurance-giving turned alarming. The ability to detect illness in your own body is a fundamental survival ability. Having this ability continually brought into question was deeply unsettling. I swung between being angry with my body for giving me false signals and angry with my doctors for not helping me. The stress caused by this unhelp was literally sickening.

2. Story-Telling

Post-diagnosis, doctors were unable to continue telling me that nothing was wrong. Instead they started telling me stories of their other patients. For example, when I told my endocrinologist how my body now became dizzy, nauseated and exhausted after exercise, he responded by telling me of another patient with Addison’s Disease who was running ultra-marathons with only a small extra dose of medication.

When I told a neurologist that since starting treatment for Addisons I was experiencing migraines on a fortnightly basis, he responded that he usually only treats patients experiencing daily migraines. He asked why mine were bothering me.

Apparently all other patients were either doing significantly better than me (why can’t you act more like them?) or significantly worse (why are you complaining?). These messages triggered thoughts like “I’m all alone in experiencing this”, “I wish my body would just behave itself”, and “I wish I was well enough to be able to even just run around the block again”. I felt isolated, sad, and hopeless – the perfect recipe for depression.

3. Symptom-Blanking

When I’d tell my doctors about the horrible symptoms causing discomfort all through my body, sometimes they’d blank me. They’d sit there with this blank face that gave nothing away, and not say anything or take any notes.

When I’d finished pouring my pain onto their desk, they’d remark “it’s great to see you’re doing so well, I’ll see you again in 6 month’s time” or “remind me again why you’re not working – is it your choice?” It was as if their ears had mis-translated “I’m sick” into “I’m well and doing great”. This experience was baffling and infuriating. “Why can’t they hear me?” I thought loudly to myself.

4. Hand-Passing

“I wish I knew more about Addison’s Disease”, stated my doctor one appointment, “what does your endocrinologist say?” Whilst referral to another doctor for care is often a legitimately helpful strategy, this requires the care to be accepted and carried by the other doctor.

Unfortunately my endocrinologist refused to accept my new symptoms as being part of my Addison’s Disease. “On this dose of medication, you can’t possibly be experiencing the symptoms of Addison’s Disease”, he told me. In other words, these symptoms are not my domain. I was offered no further help, no referral to see anyone else. I pictured my doctors standing around me in a circle, each pointing at one another and announcing “she’s their responsibility”. It seemed no-one was willing to hold my ball of care.

5. Fat-Shaming

You may have noticed that so far none of the types of unhelp discussed have involved strategies for how to manage my symptoms. It was illogical for my doctors to offer advice on a problem that they didn’t believe existed or was not within their domain of practice.

The most I got was this – “if only you lost weight, you’d feel so much better” and “it’s like recovery after a sports injury – you need to push yourself and experience pain before you start feeling better.”

Though even my dietitian advised that weight loss was not the priority at that time, I was determined to try the one offering from my doctors. I lost the weight that I had gained as a side effect of the medication the doctors had put me on. I pushed my body to attend part-time work and do regular exercise classes (and lay in pain or slept the rest of the week).

Guess what? Restricting food and pushing my sick body to do more activity did not improve my chronic fatigue, headaches, migraines, diarrhoea, nausea, insomnia, shaking, dizziness, swollen ankles or aching joints. These strategies worsened my symptoms. They also wasted months of precious energy that I could have spent implementing more targetted strategies or searching for new doctors.

The Replacement of Unhelp

Somehow I still clung onto the hope that better care was available. I think that it helped that (against the advice of my doctors) I connected with communities of patients with chronic illness. I learnt that I wasn’t alone in my symptoms or experiences. I learnt that doctors existed who were offering help and treatments to patients like me.

I took action. Into the bin! I sacked my whole medical team and embarked on a recruitment drive. I carefully researched doctors recommended by other patients and practitioners. Even then, a recommendation was no guarantee that doctor was helpful for me – we all have different interpersonal styles and communication preferences. It took a couple of years of interviews and false-starts. I’ve needed to travel interstate. But I now have a team of helpful doctors.

What I’ve required from these doctors as a bare minimum is that they are supportive, honest and responsible for my care. When I say “I’m sick”, I need my doctor to reflect back “you feel sick, that sucks”. No minimisation, no comparison, no symptom-blanking. Just a reflection of where I am at, even if that’s a place of discomfort. This helps me to feel heard.

When I present with weird symptoms, I need my doctor to be honest with me and say “I’ve not seen these symptoms before and I don’t know what’s causing them”. This helps me to understand exactly what’s going on. A doctor gets bonus points for adding something like “but I’m going to do my best to help” or “I’ll always be here to listen”. This makes me feel cared for.

The most helpful doctors of all have picked up my healthcare and carried this burden a short distance for me. They have identified gaps in my healthcare and recommended tests that should be run, or checked that I am receiving rebates to which I am entitled, or suggested allied health professionals who could help manage my symptoms. They have also sat with me and shown an open-mindedness curiosity about the variety of treatment strategies that I’m pursuing – no matter how unmedical they are. This helps me to feel less alone in my healthcare.

I’d love to see medicine schools replace Medical Unhelp 101 with Supportive Counselling 101.

Further Reading

After drafting this blog post, I read an article written by a women with irritable bowel syndrome. Her experiences with doctors dismissing her symptoms and recommending generic treatment strategies are uncannily similar to mine.

You can read about how I was eventually diagnosed with Addison’s Disease here and how the standard treatment failed me here.

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