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.