Thoughts on Caring for Chronic Illness, Mentally Unwell

In the bad old days, people with mental illness got tossed in the asylum, the heavy metal gates clanging shut forever behind them. A few decades ago, we became enlightened and tossed these least among us out onto the streets, with promises of community support, relying heavily on their committed medication taking. But some patients voiced complaints about those miracle meds. They didn't like the way they made them feel, like zombies, like the walking dead, missing their pep, or with uncontrollable shakes, depending on the illness and the medication. I sniffily dismissed their complaints as so much griping because those meds did work. But I was missing one itsy bitsy teeny weeny problem: good medication prescribing requires a doctor to listen well, monitor regularly, and just generally pay attention!

The problem was not the meds.

The problem was doctors not listening and responding to patients' complaints, not taking as long as needed to help them achieve well being.

Heck, even when prescribing a new drug, a doctor shouldn't just hand over the prescription and say see you later, or maybe in a month. All sorts of things can happen in a month, and just because the norm is nothing doesn't mean that patient walking out your door is nothing. It's even worse in that most doctors won't take telephone calls (as OHIP doesn't pay) and doctors are so booked up, it's difficult to get an appointment moved up. And so the poor schmuck has to muddle through themself until that appointment. Imagine doing that with a broken brain, whether from illness or injury? Imagine seeing a doctor who just wants to hand over pills to fix your problem without working with you to do so?

How lazy, improper, or just plain old assuming-you're-the-norm-and-this-will-fix-it prescribing makes one's life tough came home to me recently. I didn't get enough time to think through during the appointment what the doc was telling me when told to change the way I was taking my medication. Assuming since I can speak well means I can listen well and respond quickly is stupid when docs know I've had a brain injury, but then I've discovered most docs know little to nothing outside their specialty and even less about brain injury. But even without that problem, many just don't give their patients the time to absorb, think through, and ask questions about what they've just been told. I heard a story recently about how one young woman saw a physician her family knew, just so he could explain to her what her own doc would not take the time to do so: her meds and why they were important despite the potential serious side effects.

She did not have a mental illness. Any flare ups of her chronic condition -- either due to her unalleviated fear of her meds or casual medical monitoring -- would affect only her and worry only her family and friends. But a flare up of a mental illness can affect the public. And it can happen even when a person does stick to their medication regimen.

I knew a woman once who had bipolar disorder. She'd been on lithium for years and was stable. But all of a sudden, as these illnesses are wont to do, the mania part of her disorder started to outweigh the lithium's dampening effects. She needed her doctor to see her frequently and regularly to monitor the mania's emergence and adjust her dosages to compensate. If her doctor didn't see her regularly in order to spot any changes, then he'd have to rely on her to be self-aware enough to go to him when this change happened. But how many people with serious mental illness have that awareness, have that initiative to make that appointment or to go back perhaps only a day after seeing the doctor when s/he said all's fine? That's how fast illnesses can change, including ones of the brain.

The problem with chronic illness is not the cost to our health care system, it's more doctors' willingness to spend the time needed, knowing patients are the main managers of their ilness who need to understand it and the meds completely and that any chronic illness can turn on a dime and spiral a person's life down into the pit. The problem with mental (chronic) illness is not human rights, it's caring, consistent working with the person to help them live well. And then we as a society don't have to tip toe around them on the street or look behind us on subway platforms. And they don't have to live in a state of unwantedness.


Anonymous said…
Have you read Selling Sickness, by Ray Moynihan and Alan Cassels? If not, I recommend it. They discuss the influence of pharmaceutical companies on the medical community and how drug companies are increasing the "medicalization of life." My critical thinking prof assigned us to read and evaluate their argument.

It's relevant to this conversation because of a side-effect this medicalization has on the healthcare system. As drug companies try to promote pills as the solution to everything, those people who genuinely do need drugs for the treatment of their illness are marginalized in favour of treating more and more people--people who don't need drugs and may not even have a condition at all.

Many doctors are just as complicit in this scheme as drug companies, for they're often convinced by drug reps and spokespeople to push prescriptions of a particular drug as much as possible. As a result, patients end up taking drugs that don't help with their symptoms--or worse, exacerbate their symptoms. All because a pharmaceutical company wants to corner the market.
No, I haven't read that book. But I have been having conversations about beta blockers with my father. I was put on them for my fast heart rate after years of being ignored, but then had little follow up. My father was not happy with this prescription. His patients constantly complain about these dugs (prescribed by other doctors) and how tired they make them feel. Those that come off the drug inevitably regain their feeling of well being.

For me, at times, it's a godsend, at other times it gives me major problems. Obviously my body is healing so sometimes needs it, sometimes not, but how the hell to figure when out?! But it's got me thinking that those who have issues with this class of drug probably don't need it. Beta blockers are an easy way to solve a symptom without taking the time to figure out and treat the cause or listen when patients say they feel like crap on toast when taking them. When I studied psychology and physiology, the main thrust was always find out and treat the cause if possible.

Medicine is an art, and too many doctors now think it's all about tests and pills.

Thanks for the book referral!
Olive said…
The problem goes back to the trainning of our physcians. Anatomy used to be taught over two years which ment the budding physcian UNDERSTOOD how the body works, including the brain Then pharmacology was a one year course. This made the trainning longer, BUT the Physcian now understood drugs and their reaction on the body.
Also can you blame the GP's for seeing as many patients as possable. They do not have proceedures to boost their incom, many are in debt when they can start practise and payment to GP's is minimal when you consider the years of study, debt load, and costs of running an office.
Midicine is an art but the trainning does not teach that.