When I was diagnosed in 1993, I continued to work for six months, my life virtually unchanged except for a heavy heart and a secret few knew. I had time, though, to ponder the card that fate had dealt me. In 1994 I decided change was in order. So I left work for good, disclosed to everybody in sight and plunged into volunteerism. My first volunteer job involved manning the reception desk at ACT, then called the AIDS Committee of Toronto.
I thrived. During quiet times at the reception desk, I read from ACT’s extensive library, and from the periodicals that regularly graced its shelves. I learned what it was to be a good patient. “Managing your Health” was the title of the HIV bible at the time. It still exists, albeit much updated.
Managing your Health is full of information about how to be a good patient. It talks about putting together a good health team. It talks about building a healthy relationship with your doctor. It talks about being proactive, about jointly making treatment decisions.
I read all that and decided I would do none of these. This is the pre-treatment era, after all. I’m dying. I would find a good doctor whom I trust and let him do whatever he feels are the best things to keep me alive a little longer. Twenty–five years later, my modus operandi hasn’t change much. I have am HIV doctor with a terrible bedside manner. He scores zero on a scale of one to ten. He’s a doctor, though, who has been brilliant, shepherding me expertly through drug resistance, side effects and, along the way, the latest clinical trials where he thought that was a good idea. For example, I was on protease inhibitors – the saquinavir trial – way before anyone else, and it’s worked.
Through no fault of my own, I have a good healthcare team – an HIV specialist, nurses whom I like and have now known for years, an exceptional in-house pharmacist, sometimes a dietician (whose advice I ignore), a psychiatrist, a social worker. That team was assembled by my clinic. Not by me. Bad patients don’t organize a team like that.
I trust them. Ask me what meds I’m on and during episodes where it’s been complicated, with five different HIV meds in play, I can’t even remember the names of the drugs. Now it’s simpler – just two HIV meds to remember their names, plus a bunch more to handle side effects and other pain-in-the-ass symptoms that arise as you get older. Which leads me to . . .
A dumb decision or not, early on I decided I could mentally handle HIV and maybe a few complications from it - and nothing else. When you think you are going to die anyway, those choices are simpler to make. I couldn’t, for example, imagine having to manage HIV and cancer. Even HIV and a cold was a stretch.
Fellow PositiveLite.com writer Patrick Etennes has shared what he’s like in bed – maybe I should rephrase that. Fellow writer Patrick Etennes has shared what he is like in bed with flu – and I can relate. Read his article here. Point is there is no scene so drama-filled as a sick person living with HIV. Those familiar with Big Bang Theory and the ongoing joke that involves the song “Soft Kitty (see below) will know what I mean in its milder variation. Acting up is essential behaviour for the bad patient temporarily laid low, no?
Bad patients are not good at aging either. Why? Because they won’t go for those pesky and undignified tests that aging entails – looking up areas best not looked up, for example. In my case reluctance to be probed willy-nilly stems from holding onto the “one illness at a time” theory of getting by. Plus I’m a wimp, so don’t poke at me.
I didn’t say any of this made sense. In fact it’s likely an untenable approach. The know-alls are right. As you get older, comorbidities (a fancy name for having other things go wrong with you) come fast and furious. You ignore them at your peril.
I’ve recently gone through, not all that willingly, a barrage of cardiac function tests, because – well, I had chest pains. And yes, they discovered something wrong, albeit treatable. More meds to add to the list. But the process - that and a new GP I like - alerted me to the fact that being more proactive is a path that’s hard even for a bad patient to ignore. Whether I will actually walk 30 minutes a day as my new doctor suggests is another matter. I live in tundra country and I can’t see it happening in winter. Get a treadmill, you say? I literally failed my stress test on the treadmill – couldn’t keep up with a machine churning away at what seemed like warp speed. Thus indoor solutions seem limited.
Besides, bad patients don’t exercise. We are too busy eating badly. We like the unhealthy meal. Me, I like Tim Horton’s, donuts, chocolate and anything that’s sweet. Enough said.
There is no one-size-fits-all solution but the common thread that links all bad patients is that we don’t like to be lectured. We cringe, we nod politely - and then we ignore.
As a firm believer in patients’ choice, I think cringing, nodding politely and then ignoring are all within the acceptable range of reactions to being told to get serious about one’s health. They may not be the most adult reactions, it’s true. But we should never shame someone who has made those choices.
Having said that one can’t deny that at some point self-preservation kicks in. The state of our health often affects others around us. It can impair our ability to do things we like, like seeing (I’m going for my cataract surgery next month. I didn’t want to go, but I have to - because I like seeing.) Point is we sometimes have to decide between a good life and a Tim Horton’s boston cream donut. Not an easy choice for some, I know – myself included – but at some point I may need to grow up.
I just may have reached that point.