My Nelson Mail column this week. The headline and lead got changed in the editing process, so here’s the original – pointing out the human fallibility of our health system.
The myths of modern health are multiple – and I’ve had to unlearn them all since I got sick.
One – pain is temporary, and there’s always drugs for it.
Wrong. Chronic pain affects 1.5 billion people worldwide. Of course, in many cases – colds, broken legs, appendicitis – pain is temporary, and doctors know how to treat it. Short term pain relief is accessible because the side effects of the medication only become a problem when you need it all the time.
For me, drugs do little. Some take the edge off, but side effects and my desire to be independent and functional limit my use. I’m building tolerance to what does work, meaning dosages have to continuously increase. Some make me fall asleep, hyperventilate or have hallucinations. Some make me lose or gain weight, some make me cry all the time.
There is no perfect medicine for longterm pain. At best, it’s a constantly changing cocktail which must be carefully managed. That alone is exhausting.
Accepting that you will always be in pain is a fairly brutal experience. Our brains are equipped for short term trauma. Bursts of adrenaline carry you through. Once that initial period passed, I feel like my brain got confused. It didn’t really understand why nothing was changing. Neither did I. I went looking for answers.
Myth two – doctors are always right
Wrong. In 1844, chronically ill sociologist Harriet Martineau wrote the book Life in the Sickroom. I first read about Harriet in Stephanie de Montalk’s incredible memoir on pain, How Does It Hurt?
Life in the Sickroom caused huge controversy because it explained how to regain control even in illness, overturning the traditional doctor/patient relationship. The British and Foreign Medical Review was so alarmed by this idea, they claimed that it was impossible for an ill person to write healthy work. They thought it outrageous that anyone, especially a woman, would suggest questioning being in control when ill. Instead, the Review recommended patients follow “unconditional submission” to doctors.
Recently I wrote an article about illness, and someone commented that it reminded her of the importance of ‘personal health sovereignty.’ I think this is what Harriet was getting at. Being ill renders you vulnerable, but there is no need to relinquish power.
As I said, I had a lot of questions about what was happening to me. Doctors couldn’t answer them. After six months, I was diagnosed with an intestinal infection and pumped full of antibiotics. This medical decision landed me in hospital a few weeks later, as the antibiotics killed all the “good” bacteria and allowed the “bad” ones to take over. This caused the massive inflammatory incident that eventually lead to my development of Ankylosing Spondylitis.
I do my best not to be bitter about the strings of seemingly minor decisions (including my own), that brought me here, but I can’t help but wish I had asked more questions and looked further for more answers. Now, I am committed to research and rarely accept a first opinion on anything.
Myth Three – hospitals are always carefully administrated and safe.
This kind of follows on from the above. I realise it is a general and rather alarmist statement. But I don’t say it lightly.
I definitely not saying don’t go to hospital when you need to, or don’t trust them. There are many situations in which we have to. But this is about personal sovereignty again. You have the right to ask questions, the right to expect expert and careful treatment.
When I was in hospital, I was denied medication. I was repeatedly given food I am intolerant to, despite the hospital’s dietician visiting the kitchen on my behalf. When I was discharged, I was given half the paperwork I was supposed to have, and my referral for urgent follow-up was misfiled. When I rang three weeks later, they had no record of it. I wasn’t even on the waiting list.
Recently, my friend gave birth to a baby girl. The birth went well. Two weeks later, the baby became unwell. My friend took her into the emergency department. A doctor informed her that her daughter was fine and they should go home. A few minutes after, the baby went into convulsions and medical staff had to work for an hour to stabilise her. If she’d been in the car, we probably would have lost her.
Humans are fallible. Doctors are human. Hospitals are run by humans. While I utterly respect the work these professions to – and I am so grateful for my doctor now, he makes my life much, much better – I think it is very important to remember that no one knows you like you do.
While Harriet wrote about challenging her doctors, I’m not sure she ever did it. While in chronic pain, she is said to have believed her illness was psychosomatic. When she died, a 30 inch tumour was removed from her stomach.
Ask questions. Do research. Your health is yours.
Yes, I could not agree more. I have had different health issues, but gathered very similar experiences with doctors and some other health professionals.
Blind faith in them is something I cannot recommend.
The worst comes if things go wrong, and when we try to address professional failings, for instance by writing to the Health and Disability Commissioner, it can become a bureaucratic nightmare.
There are surprisingly few cases they ever really “investigate”. They have far too much discretion and too many alternative options to “resolve” issues.
Many decisions mean little more than a slap on the wrist with a wet bus ticket, that is on the wrist of the doctor or whosoever made wrong decisions or was responsible for mistakes.
And most doctors dare not criticise their colleagues, so the Medical Council only steps up in few rare cases.
Great post, found this from a post you made on the AS sub.
I am newly diagnosed (just under a year), 35 from Melbourne.
I got put on a 6month course of NSAIDs, to then go onto TNFs some point in the future.
After a week of NSAIDs, it played havoc with my gut, so did as much reading up on AS and uncovered a number of stories & studies around the relationship between the gut and AS (which I am sure your aware of). This led me to play with diet, beginning with no starch but not transitioned to Paleo Auto Immune Protocol (slightly tweaked to avoid starch). Still early days, but feel like I can definitely correlate flares with when I have been less strict with the diet and good days when I stick to it.
The thing I struggled with NSAIDs, is that they are known to cause issues with your gut. From the reading I did, there seems to be some hypothesis that leaky gut is also related to AS. So, NSAIDs damage the gut lining, but good diet fixes it = for me, I am currently skipping the NSAIDs and trying the diet approach, and hoping it works.
This is the first time in my life that I have not taken the path recommended by the doctor (i.e. my rheumy), but I want to at least try the non-pharma path to begin with. I understand that doctors cant really prescribe a specific diet, as its a case by case basis and they also have little control over if the patient will stick to it (I imagine for a lot of patients they would not), and it is easier for them to prescribe medication that has gone through the relevant testing process (and of course there are many more studies on effects of pharmaceuticals, as funding is greater).
Look forward to reading more posts.