Monday, May 13, 2019

Doctor Google vs the patients

If you ask any suburban family doctor what the hardest part of their job is, then I'm sure that - along with under funding, excessive patient loads, waits for tests and referrals, work load, the burden of $100K student debt and the office politics we all must deal with - they'd mention the frustration of competing with doctor Google. People who, before seeking actual medical advice, have researched their symptoms online, and without the ability to distinguish credible sources from quacks, have come up with dubious self diagnoses from which they will not be swayed. And I get it. We've all seen people online convinced of things that are just not true, who, when faced with the facts, will double down convinced peer reviewed sources are riddled with bias. It must be especially galling for doctors to deal with anti vaxxers, who are convinced doctors are part of a massive global bug pharma conspiracy to force poison on our kids, and won't be swayed from their self anointed superior position no matter how much harm they are shown to be doing.

It can be really hard these days too to distinguish who is and isn't a credible medical source. My job involves helping people on the National Disability Insurance Scheme find support workers. One of the main tasks is making sure that support workers who claim they have allied health credentials actually have verified medical qualifications. This means checking that they are registered with the Australian Health Practitioners Regulation Agency. But not a week goes by without a potential worker claiming they have this or that dubious qualification - qualified aromatherapist, member of the homeopaths society - and when I actually look up the organisation they claim to be certified by, it's an office above a shop in Byron Bay, the only requirement for membership a $200 annual fee giving you a pretty certificate. We don't allow this kin d of rubbish, but I can see how convincing it would be if you don't have the skills to tell a real qualification from a quack one.

So what I'm saying is, I get why doctors are frustrated when patients walk in thinking they have all the answers from a Google search, instead of the ten or so years of education and training it takes to become a general practitioner. 

On the other hand, first off, those doctors are human. They are not computers with all the answers, they have to deal with hundreds of patients presenting dozens of potential conditions in a week. And that medical school training has to covers thousands of potential injuries and illnesses; there's not enough time to cover everything in detail. After a long day dealing with high blood pressure, infections, depression, heart problems, and elderly people with the multiple chronic conditions of a body winding down in its eighth or ninth decade, with the best will in the world a GP won't have the perfect solution for every patient they see in that fifteen minute window.

And this is especially true for those with chronic illnesses. Thanks to innumerable TV medical shows, we imagine that every condition a patient may face can be diagnosed with one or two visits to the doctor, maybe a couple of lab tests, then everything's sorted and the healing can begin. The reality is very different for those with symptoms that defy easy classification. I've been sick for months now, and trying to find answers, and we're not really any closer to a solution. And of course, I've been trying to work out what's wrong myself, because I've been living with this every minute for six months. And this is where I've run into doctor trouble.

In December last year, I started feeling exhausted all the time. I put it down to work stress and Christmas; everything else in my life was going better than it has for many years. I upped my consumption of fresh veggies and hoped it would pass. It didn't. By January, I was sweating profusely in Sydney's humid summer heat, and many days I'd get home from work at 7pm, wipe off my make up and strip down to my underwear, and pass out on my bed until morning. My body was sore all the time, my legs leaden as I tried to make it to the office - which too often I couldn't. All my life I've had a sensory aversion to breezes. But bizarrely, I suddenly craved them, cool breezes being the only thing that soothed my aching body. My abdomen was distended and painful, I ran mysterious fevers, itched and sweated, slept all weekend. What was happening to me?

Photo by Tan Danh from Pexels


So of course I went to the doctor, starting the fun merry go round I'm still on. My regular GP, who I have been with for 3 years and trust implicitly, has taken a year's leave to do further training. So I started seeing another doctor at the practice, an older woman. It hasn't gone so well. 

My first visit, she said it was probably depression, but ran the set of standard blood tests. They all came back pretty much normal. But I was still sick. My blood pressure was ridiculously high; she gave me medication to lower it. It helped a little, but not completely. She thought possibly an STD, and gave me the full battery of tests (and oh man, I'd lost touch over nearly a decade of monogamy. There's stuff out there now I'd never even heard of). Anyway, all good there. I suggested maybe premature pre-menopause? She laughed and said I was too young.

But my menstrual cycle was all over the place, like the rest of me. And on my next visit, she suggested early menopause. Incredulous, I pointed out she'd laughed it off last time. Turns out, she'd only taken the barest glance at my computerised chart, seen I was in my 30s, and decided I was too young for premenopause. On the next visit though, she'd realised I'm nearly 40.

Sigh.

Anyway after reading Gilda Radner's memoir It's Always Something of her experience with ovarian cancer - including a ridiculous delay in getting a diagnosis, said delay probably contributing to her death at 42 - and lots of research of credible sources I mentioned the possibility of ovarian cancer to my doctor. Again, she laughed, stroked my arm (ugh), and said don't worry, silly! You don't have cancer. But I wasn't in a panic about getting cancer, simply raising it, calmly, as a possibility, knowing how difficult it is to get that imperative early diagnosis. By now I was worried - about my doctor. I had an uneasy feeling every time I saw her, and began to suspect my blood pressure was spiking cause just seeing her was stressing me out. She sent me along for an ultrasound (which I paid out of pocket for, for what it's worth in this election campaign - thank God I have the ability now to do so) - which revealed a 7cm cyst strangling my left ovary, ovaries being about 2cm long for scale. It's not causing my symptoms, but isn't helping either. I worried all week what my doctor would say about the follow up and what the scans revealed, as the ultrasound operator really won't tell you anything. My doctor didn't call all week, so I figured no news was good news. I headed in for my appointment. I knew from more reading that 7cm is pushing the upper limit for size where immediate treatment is advised; I can feel the damn thing through my stomach, and it hurts.     

She hadn't looked at my scans yet, but again advised me not to worry. 

It was at that point I decided to switch to another doctor. Someone young, as everyone generally advised. My regular guy was maybe ten years younger than me, a little wet behind the ears when I first started (I mentioned seeing Janette Howard in the pharmacy and he didn't know who that was) but he knew how much he didn't know and, I believe, was willing to accept I'm the expert on my own body, and to listen to my ideas about it (there was a serious issue I had where I suggested a treatment he hadn't used before, and it worked, and we both reflect on it as a success). 

I'm about to go on my first overseas trip in 15 years, which I'm very proud to have paid for all myself without going into debt. So that's taking a lot of my mental energy right now, even as my health ebbs and flows. But I recently read an article from the New Yorker, What's Wrong With Me?, about a woman's experience trying to get a diagnosis of autoimmune disease, and life after. And then I read it again and again. It described what I've been going through so well - the exhaustion, the apathy, the brain fogs, the struggle to work - I genuinely like my job and I hate not being able to do it. The flare ups of pain, and the remissions when you hope that this time it's over for good, until it comes back again. The hope that you'll get a blood test that has all the answers, and the frustration when that doesn't happen. The loneliness, the feeling that no one believes you. Telling work you're sick again. What's wrong? I don't know. And the feeling that you just want your life back. 

There was so much I wanted to do this year. Finish my memoir. Write a stand up comedy routine and try my hand at a few open mike nights. Really get involved in the state and federal election campaigns. But all my energy has to go in to my first priorities - work and my child and cat. There's nothing left over for anything else, and even though it's not my fault, I feel like a failure and the frustration makes me want to cry. 

I seem to remember something about the possibility of an autoimmune disease being mentioned by my previous doctor at one stage. Through extensive reading about autoimmune diseases, I think I've worked out a very likely possibility. And that's why I want to see a new doctor, one who will take me seriously. I don't have a medical degree. But I have a degree, one that at least taught me to think critically and distinguish a credible source from a non credible one, and included several units on the social determinants of health. And I've lived with this condition, whatever it is, for over 200,000 minutes so far. I've had lots of time, when I'd rather have been at work, lying on my bed, hot and sore and bloated, to think about and research what's going on. I've become a reluctant expert in my own condition. I don't want someone who will fob me off, try to console me. I want answers.

For a look at how the system stymies and fails those with chronic conditions that defy easy diagnosis, please take a look at the excellent work of Asher Wolf, who when she's not doing excellent work on cyber security, has posted extensively about her journey with another auto immune condition, Ehlers Danlos Syndromes. EDS has come to some public notice recently as one of the queens on this series of RuPaul's Drag Race, Yvie Oddly, is affected by the condition. But it's still little understood, and how much time does your average GP spend learning about specific conditions such as this?





The responses to this are well worth reading.


As for me, I had to go home from work today when I was too sore to sit in my chair at the office and the computer screen was too blurry to read. I staggered home and passed out for six hours. At least my cat was happy I'm home, but I feel terrible about missing work when I'm about to take two weeks off. I can only hope this flare now means I won't have one while I'm away - but the reality of long flights, jet lag and change in temperature flying from Sydney in early winter to Los Angeles in summer means things are dicey. I've organised travel insurance for the not unlikely possibility I pass out, need an IV, and wind up $10K in debt to the US health system. I don't know what the future holds. I hope my condition can be managed - my life is getting where I always wanted it to be and there's so much I want to do.

When I get home, I'm going to start again with a new doctor, finally trying to get a diagnosis. I don't want to be the know it all; I want us to work together, consider all the possibilities. I want to get better, and am terrified of the alternative, the life I've worked so hard to build being taken away by illness. But whatever happens, I don't want a battle with my doctor. I want an alliance, an entente cordiale, where we work together to finally work this out.

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