Don’t let a poor healthcare experience permanently knock the wind from your sails.
Have you ever found yourself thinking “well that sucked!” after finishing a conversation with a doctor?
That was me earlier this month—feeling not only that I had wasted time, energy, and money, but that I also never want to face this new doctor again. There was the added sting of being caught off guard: this doctor is highly regarded amongst other patients that I’ve spoken to.
Alas, I’ve been around the chronic illness block enough times to know that these things happen. Often, in fact. A growing number of individuals are being afflicted by a complex constellation of symptoms—often autoimmune, neurological, or infectious in nature—which defy simple explanation and are easily overlooked by classically trained doctors.
This can be quite a shock to those with previous bills of good health, much like I had had prior to 2014. Up until that point, I thought modern medicine would catch me should I fall, offering straightforward solutions that would have me back on my feet in no time—or at the least, answers and a clear path forward.
What I found instead was a patchwork system of healthcare providers that can do more harm than good in an individual’s quest for better health. With their penchant for viewing complex patients with disbelief, and reticence to actively consider the downstream effects of their approach, level of compassion, and attitude on a patient’s quality of life, it’s easy to see why many people fall through the cracks and fail to receive the help they deserve.
Thanks to an undying internal drive bolstered by supportive friends and family, I never gave up the fight to find a diagnosis and treatment. But I am sympathetic to those earlier on in this journey, in their first encounters with the reality that awaits if your symptoms colour outside the lines.
In many instances, dealing with doctors, nurses, therapists, and insurance companies can be just as harrowing—or more—than managing an illness itself.
What do you do when a doctor dismisses your complaints, just because you look fine?
Or when you’ve waited months to see a specialist, and they give you no more than 15 minutes of appointment time?
Or when the doctor can tell your body is not functioning well, yet hastily concludes your problems are all in your head?
Or when the new gatekeeper to the medicine you need disputes your diagnosis, barring you from accessing a treatment protocol with demonstrated efficacy in managing your symptoms?
Depending on how this information is delivered, your relationship with the doctor, how vulnerable you are, how much you’ve already suffered, and whether or not you have any other medical options, these events may cause significant despair. Sometimes it’s enough to make you want to give up altogether—I’ve certainly been there.
One positive outcome of this month’s troublesome doctor’s appointment? The realization that I’ve developed greater inner resources for dealing with these setbacks.
Younger me would have remained distraught and discouraged for days; present-day me has gained the perspective to not let this one bad experience dictate the course of my days and months ahead. In recognizing this growth, I’m emboldened to “keep moving onwards and upwards,” as my mom would say.
It’s exhausting to end up in a battle against someone you thought was on your side. It’s maddening when the medical system is as much of an obstacle as illness itself. It’s deflating to be unseen and unheard. But for every dead-end you run into, know that you’ve made it one step closer towards eventually finding a path to wellbeing. Only with the help of supportive family and friends have I been able to beat this understanding into my head.
For those of you reading this, I hope the learning curve will be kinder. Looking back on my own journey, there are certainly some pieces of advice that I wish would have embraced sooner.
Here are some ways you can recalibrate yourself if you’re feeling dejected from a negative healthcare experience:
1. Remember that doctors are only human.
Doctors are amongst some of the most esteemed professionals in our society. With their high levels of baseline competence, years of training, and intimate role in keeping us alive, we tend to place them on a pedestal.
We never imagine them operating under anything less than the highest levels of proficiency.
But doctors are liable to the same faults as the rest of us, too. They’re only human—not part of some pantheon of godly experts that can do no wrong.
Maybe they’re under budgetary constraints. Maybe they’re stressed by the latest workplace politics. Maybe the resident or intern they’re responsible for just messed something up. Maybe they’re running late and need to pick up their toddler from daycare.
Doctors have the same pressures as any human in a high-stress job, with the added responsibility of holding their patient’s mortality in their hands. Sometimes they lack the expertise you need, and sometimes they flat-out get things wrong. Some piece of obscure understanding they gained in medical school may be outdated by the time they apply that knowledge to a rare disease patient 10 years later.
The field of medicine continues to change at a pace that many practicing physicians can’t keep up with. And cutting-edge research can be applied to practical situations in a multitude of ways, leading to disagreement over how to attain the best patient outcomes.
As one of my doctors remarked, there are some specialties where medicine is more art than science.
2. Accept that barriers to diagnosis and treatment are common, and hone the ability to advocate for yourself.
If you’ve lived most of your life in good health, you’re used to thinking that your body will shake off any signs of illness. By the time you drag yourself to a doctor, you may have let symptoms progress to a debilitating point and expect that the severity of your state will be understood.
However, doctors don’t always see you the way you wish to be seen.
Most conditions are obvious or visible—at least, that’s what society tends to think. If lab work, diagnostic imaging, or other examination methods fall within normal ranges, chances are high that the first physician you see will send you on your way without further attention or care.
Sometimes this scenario is reassuring; but other times, you know in your gut that something remains seriously wrong.
It’s not fun having to justify why you’re back at the doctor’s again, kick up a fuss about what’s wrong with your body, or plead to be taken seriously. But over the years, I’ve learned you need to be extra explicit in expressing your concerns and become the squeaky wheel when you meet resistance. While it may feel uncomfortable, dealing with the alternative is worse.
It took 5 years of effort to receive my diagnosis of autoimmune encephalitis, with my mom co-piloting my advocacy efforts. In that time I dropped out of university (twice) due to significant cognitive issues. And even when I worsened to the point of hospitalization last year, some of the “specialists” that examined me in the emergency room continued to dismiss my symptoms.
It was only because of my mom’s persistence that we encountered a doctor who put the pieces of the puzzle together, and prescribed key medication that restored my quality of life.
3. Seek other opinions and level up your knowledge.
Give 3 neurologists the same case information, and you may end up with 3 different answers about which treatment, what dose, and what duration should be considered. I’ve dealt with this frustration firsthand, many times.
You don’t need to follow the advice and protocol of the first doctor you see; if you’re unsatisfied with the information they’ve provided you, get a second (or third) opinion.
Some doctors may be more conservative and take a “wait and see” approach before prescribing heavy medications, whereas others may offer aggressive treatment from the get-go. One way isn’t strictly better than the other—the important point is to work with a doctor who has a treatment style you’re comfortable with.
Find the right patient-doctor fit for your goals.
Of course, you don’t always have the luxury of choosing between a range of healthcare providers. With a poorly recognized illness, you may be hard-pressed to find a doctor that has any familiarity with treating someone like you. In that case, learn to work with the people on your care team and supplement their management with the resources at your disposal. Get in touch with patient organizations, join forums focused on your illness, and read research papers to get another perspective.
If you’ve heard “the doctor knows best” or “just leave it to the doctor,” chances are high that this is coming from someone who has only dealt with conventional health issues. This hands-off attitude doesn’t apply in the same way to complex problems; the sobering truth is that the best outcomes occur when patients and caregivers educate themselves and take an active role in shaping their healthcare plan.
This has certainly been the case with me and my autoimmune illness, which was mismanaged and dismissed for years.
If you’ve spent a small lifetime fighting for appropriate care, you may find that you’ve become more of an expert in your disease than the professionals tasked with treating you. Unfortunately, some doctors may be threatened by the level of knowledge you exhibit and shut down when you ask them perfectly reasonable questions.
The best doctors will appreciate your eagerness to play an active role in the discussion, whether it be through sharing pertinent journal articles, assembling a team of healthcare providers for them to collaborate with, or making suggestions about next steps you would like to see.
4. Talk to supportive friends, family, or other patients.
It’s not sexy to talk about the ways your body is falling apart and complain about how you feel wronged by a medical professional. It can make casual conversation uncomfortable, and puts you in a position of vulnerability.
But to pull out the old cliché: you don’t need to suffer in silence. In fact, you should seek a supportive environment for the sake of your mental health.
They key is to find the right people to talk to. I’m fortunate to have my mom, who has shouldered part of my healthcare burden by providing a wealth of emotional and logistical support. She’s always willing to listen and provide a sounding board to discuss plans. But I can appreciate that others don’t have the core backing of those closest to them.
In dark times, the people you consider family are not always as compassionate as you would assume.
I’ve kept a handful of close relationship throughout my illness, but the majority of my social group fell by the wayside as I started to relate less and less with the directions they were moving. A big chunk of my daily concerns don’t match those in my expected peer group anymore—and that’s ok. The bulk of my surplus energy has been well spent on reclaiming my health.
In my desperation to unravel my medical mystery, I sought the opinions of other chronic illness patients in online forums—mostly Facebook groups. What I didn’t realize was the emotional support I would also gain. In the process of discussing factual matters like medications, doctor recommendations, or symptom management, it became clear to me how powerful it is just to connect with someone facing the same ugly trials as you.
I would HIGHLY recommend becoming part of a patient support group, especially if your illness is straining your other relationships. They’re easy to overlook, but are arguably one of the greatest places to feel seen or heard.
It’s been a blessing to find freedom from the deep sense of isolation that I had quietly developed from having a chronic illness.
Remember: the wind from your sails isn’t lost for good
Bad appointments happen. You can think of them as a rite of passage—not the one you were looking for, but one which includes a warm and understanding club of patients on the other side.
After my trainwreck of a doctor’s visit this month, I felt lost. There was no sense of control in the immediate aftermath—there was the shock of what had happened, the fear of never getting better, and the uncertainty of how to proceed.
I felt mad at the medical system and for the whims of my body putting me in this position.
But life rewards those with resilience: in this case, those with a strong stomach for intimidation, ignorance, and dismissal. If you have a rare or complex illness, no single doctor will get you back on your feet; you are bound to encounter these negative attitudes at some point. Eventually, you might learn to harness them as part of your fuel to recover and thrive.
After talking the experience out, I had the wind back in my sails and put pen to paper for this post. Galvanized, I set off with determination to make something good come from the appointment.