Recently, a friend posted this piece about doctors who “came clean” regarding the state of their ability to interact with patients during the course of treatment. It confirmed a few things I’ve learned over the course of the last year, and while I’ve wanted to write something about this for a while, it’s the piece that pushed me over the edge.
For those who don’t want to read the full article above, I’ll summarize: doctors are overworked and exhausted, drowning in medical administrative work, and this affects their ability to take a holistic and thorough approach to patient care. Patients who advocate for themselves often find that they ultimately reach diagnoses their doctors might not originally have reached.
There are two prominent examples of this in my own life.
The first example in my life where advocating for myself proved critical in receiving a correct and complete diagnosis has to do with the back injury I suffered earlier this year. I say “back injury,” but as it turned out there was a second issue that my doctors initially missed. (And I’d like to say here that I am extremely impressed by the service and treatment I received from my doctors; they were empathetic, consummately professional and fantastically coordinated in their treatment plan, and I would recommend them without reservation to anyone in the Manhattan area who required an osteopath, pain management specialist, or physical therapist. Drop me a line if you need their information.)
Initially, it was clear that I had a back injury, and as the horrific pain (I’m talking a legitimate 9 on the pain chart, only because I wasn’t passing out) I experienced started to diminish with treatment, I was sure something else was wrong. There was a second source of pain, which hadn’t been clear from the start. I was shown a diagram that demonstrated how the pain could be connected to nerve issues in my back, and we attempted treatment to address that source (which helped, if only slightly). Finally, after shuffling between two doctors (different specialties within the same practice) insisting there was something wrong in my hip, I was sent for another scan. What did it reveal? Additional issues. With my hip. Had I not kept insisting something more had gone wrong, the second issue might not have been discovered or treated, and I would still be in a fantastic amount of pain every day instead of the dull ache that currently intrudes on my day to day life.
The second example is a little more detailed and a little more personal.
I’ve largely avoided posting at length about personal mental health issues on my blog; apparently this is the issue that pushes me over the edge in that regard. It’s that important to me that people understand the critical nature of advocating for their own treatment. So here goes.
I’ve battled depression and anxiety for many, many years, beginning in my mid-teens. I’ve been on and off so many medications that in recent years I’ve had to go back and check records to determine what I’d already tried, because for over fifteen years, nothing worked. Or rather, medications and herbal supplements might briefly take the “edge” off a battery of symptoms I won’t get into here, but crushing depression always came back, and the coping mechanisms I was able to use tended to be self-destructive and insufficient. I would push forward with various doctors and medications as much as I was able, in short spurts, then despair and retreat when it became clear that I’d just spent months trying out a new treatment option that was ultimately unhelpful.
Just over a year ago, that changed. I had finally found an excellent cognitive behavioral therapist, who had recommended me to an excellent psychiatrist, and was seeing both concurrently, but as the stress of the holiday season set in, my symptoms started becoming more and more pronounced. Frequent, severe panic attacks were the least upsetting of my symptoms, which (if you’ve ever had a panic attack, you’ll know) is really saying something.
Through conversations with friends whose mental health experiences sounded similar to mine, I decided to start tracking my mood with a simple chart: every day, I checked off a box that indicated whether I felt depressed, “elevated” (i.e. more energetic/focused/productive than usual) or neutral. I tracked what medications I was taking, how much sleep I was getting, my alcohol intake, whether I had panic attacks, and more. On a daily basis. For three months. And saw a pattern starting to emerge. And rather than looking like a straight line with a few dips during depressive episodes…it looked more like a series of hills and valleys. The valleys were deeper and the hills weren’t as pronounced, but they were there.
Armed with these charts, I went back to my psychiatrist and we started having a new conversation. We started looking at different types of disorders and categories of medications. I brought up treatments that other friends had mentioned, and in an interesting turn of events one medication that had helped them wound up being the same thing another family member took (for a different reason). My doctor agreed that we would try this new treatment option.
And unlike the antidepressants I’d taken on and off for over fifteen years, the new medication worked.
I don’t mean like, “took three months to build up then gave me moderate relief,” either. I mean, two weeks after I started titrating up this particular medication, I was already feeling better. Within a month I had cut down significantly on separate anti-anxiety medications. Two months in, when my back went out and I found myself lying in bed for the better part of four months (before I could undertake even limited/minimal physical activity), I was stunned at how well I was able to maintain a positive outlook (with obvious, justifiable, and normal bouts of self-pity and sadness).
I felt like myself again – the self I hadn’t seen much of and had been trying to get back since things started going south in my mid-teens. Coupled with regular CBT sessions, the new medication brought me back to a place of emotional equilibrium, of being able to step back from situations and consider things from a more objective viewpoint without flying off the handle or melting into an emotional puddle. I let go of my self-destructive, unhelpful “coping” mechanisms, and didn’t miss them.
And none of it would have happened if I hadn’t taken an active role in figuring out what was going on, and advocating for myself with a doctor who, while (again) extremely competent, would not have had the information she needed to help make an accurate and overlooked diagnosis. Furthermore, a few months in, when I was feeling kind of physically gross, a friend mentioned that the medication I’d started taking could result in depleted amounts of a necessary vitamin, and I went to my Primary Care Physician to request a blood test. It turned out my vitamin levels were low, and I started taking supplements. Probably not life-threatening, at least in the short term, but if I hadn’t sought out that information and brought it to my PCP’s attention, I wouldn’t have known – and after taking the vitamins for a short while, I again felt an improvement in my day-to-day physical activities.
Finally, a third example, from the life of a friend who has recently gone through a heartrending and difficult experience: in the aftermath of her ordeal, she had a gut feeling that something was still wrong, but nothing showed up until she insisted the doctors perform a specific scan. When they did? They uncovered an issue that could have put her life in danger further on down the line.
What I’ve learned from my experiences and those of the above friend and others is this: we are all the best advocate for our own health. We are the ones who, barring actual cases of hypochondria, know when something is wrong. (And even a hypochondriac knows something isn’t right, it’s just that they think it’s something physical instead of mental. The signpost is still present.) It is our responsibility to both communicate with doctors about our concerns in a firm and informed manner, and in a way that helps guide them towards correct diagnoses and effective treatments
This doesn’t mean running off to Google and arriving at the doctor’s office with stacks of printouts from WebMD. It doesn’t mean insisting “I have XXXXXX disease because such-and-such.” It does mean doing some basic research, talking to others, keeping records of our own fluctuating bodies and minds, being aware of our own “normal” and our own “abnormal,” and in some cases, leaving the care of one medical professional for the care of someone who will listen to what we have to say.
In my own experience, I found I received better responses and care when I brought facts to my doctors’ attention rather than pointing them in the direction of a specific diagnosis (or making suggestions of potential sources of discomfort, rather than end-of-line diagnoses), and this makes sense: by presenting my own “diagnosis” as fact, I would narrow the scope of what my doctor might look for. Walking into mental healthcare professional offices and repeating a diagnosis that I’d been given at age 17, for which no treatment had been effectively found, resulted in doctors looking for solutions to that problem. Walking in and saying, “I don’t feel well in X, Y and Z ways, and here is some raw data I’ve collected, what do you think?” resulted in a real dialogue about me and about my health, without (to as large a degree as possible) the baggage of what had turned out to be a years-long incorrect diagnosis.
It’s not always easy to speak up when you feel your doctor may have overlooked something, but if they’re a good doctor, they’ll be glad you did. If they’re not, or if they’re dismissive, or otherwise make you feel as if you’ve done something wrong by advocating for your own treatment? Then you know it’s time to look for a new doctor. Looking back, the doctor who had made the first incorrect diagnosis about my mental health disregarded the most important question I asked her, and while I can hardly blame my 17-year-old self for letting the question go, if I’d known more at that time in my life I would have looked for a second (and third, and fourth, and…) opinion.
If speaking up on your own behalf is not something you feel capable of doing, then bringing along a friend or relative who can advocate for you is another solution to this problem – but it still relies on knowing yourself, knowing your body and mind, and being willing to communicate with another person about your thoughts and feelings in an open and frank manner.
Have you had experiences where advocating for yourself with a medical professional resulted in learning that your gut was right when it came to your diagnosis? If so, and if you’re comfortable sharing, I’d be interested in hearing about it in the comments below.