The Disabled Writer

If you’re a zebra like me, chance are you’ve got at least seven different doctors. Five of them you’re on a first-name basis with their receptionist, three of them can have your chart pulled up just off of your caller ID, and one of them you have their personal number in your contact list. These are the doctors you’re close with, the ones who know your medical history (and your conditions) inside out. But then something happens- you need to see a new doctor for something. And chances are, you know better than your doctor.

It’s an experience we’ve all had- you go to a new doctor, only to find they know next to nothing about your condition. Even worse, a lot of times they’ll flat-out ignore your concerns.

To make things clear right off of the bat, I am not talking about people who have the sniffles and consulted Dr. Google and now think they have an advanced medical degree. Those are the people who are a part of why we have this problem. Nor am I talking about the people who think that reading Jenny McCarthy or watching a YouTube video makes you an expert on vaccination. I’m also not talking about the specialist you see specifically for your condition, or the other specialist they specifically referred you to by name. No, I’m talking about the people who have hard-earned knowledge of their unusual conditions from years of experience living with it and seeing likely dozens of specialists for it.

Another word you may see me use repeatedly here is “zebra.” A zebra (or as some others will say, “unicorn”) is a person with an uncommon health issue. In medicine, you’re taught when you hear hoofbeats, think horses, not zebras. Basically, what this means, is when you see a set of symptoms, chances are it’s what is most common. The horses. But there are those of us who don’t have the common diagnosis for the set of symptoms. We’re the zebras. Think of it like this- you walk into the doctor’s office with a headache, joint pain, cramps, and nausea. 99% of the time that’s going to mean you’re dehydrated. You’re a horse, you’re common. What’s expected from the situation. But if you’re a zebra, those symptoms probably means you have an autoimmune condition of some sort.

Now, let me tell you a story about knowing better than your doctor.

There are many, many times I’ve left an appointment feeling disappointed, or like I wasted my time. But there’s only one time I’ve just straight-up walked out in the middle of an appointment.

For those of you who are repeat readers or who personally know me, you’ll remember that one of my invisible disabilities is an immunodeficiency. Specifically, common variable immunodeficiency caused by an autoimmune disorder. How that typically manifests for me is I’m particularly prone to respiratory infections. Before I started my infusions, I’d have a new respiratory infection every other week. And without aggressive treatment for what usually would start as a common cold, it would quickly turn into a sinus infection, which would turn into bronchitis, which would turn into pneumonia.

Well, this time I started off with a sinus infection. Lovely, right? They’re such fun. Unfortunately for me, the doctor who at the time was my primary care physician was booked that day, so I was stuck seeing a different doctor at the office. Red flag number one for a zebra- seeing a doctor you haven’t had a chance to thoroughly vet first. Until proven otherwise, you know better than your doctor. If one of your specialists hasn’t sent you to this particular doctor, and you haven’t had a chance to do some reading on them, how can you know you can trust them?

So, here I am

So, here I am, at the doctor’s office. In comes the doctor, who asks what’s wrong. I told them that I had a sinus infection, and seeing as I have an immunodeficiency, here’s the treatment I need to prevent it from progressing into bronchitis. Nothing major, just a course of steroids and a basic high-strength antibiotic. Nothing I hadn’t been on a million times. And hey, I know I’m a zebra. I know my body. I know what’ll happen to it, and what has and hasn’t worked in the past. I’ve lived with my condition for years.

But no, this doctor thinks that they know best. “No,” they said. “I don’t think you need that. You’re a healthy young 20-something, I don’t think you’ll get bronchitis.” Red flag number two. A doctor who thinks I’m… healthy? Healthy? Me? Not in this economy. What part of “I’m a zebra and here’s how” lead you to believe I’m healthy? Did you listen to anything I said?

“I really think you should reconsider prescribing me what I need,” I had tried to explain. “I have a well-documented medical history of sinus infections progressing into more serious infections like bronchitis, due to my immunodeficiency.”

“You really don’t need to worry about bronchitis, you’re a healthy young man.” Red flag number three, ignoring me explaining for the second time how I’m not “healthy.” Three red flags in a row, and they didn’t give a single indicator that they have any interest in actually treating me. I’m out. Does this doctor actually listen to their patients at all? Or do they just think that their one or two lectures fifteen years ago with no real hands-on experience since on my condition trumps my years of living with the realities of it? You know better than your doctor.

Truthfully, it’s probably a combination.

Talk to your friends who are zebras- the details on our experiences are all going to be different, but we can all tell you about countless experiences we’ve had with doctors not taking us seriously, and even at times endangering our health for what seems like the sake of their own egos. That story may seem like a single case of a bad doctor, but it isn’t. I have dozens of stories just like it, and I’m sure your friends do too.

Not all doctors are like this- some listen to us, acknowledge our experiences as valid knowledge, and include us in the diagnostic and prescribing process. After all, you know exactly what the normal levels for your creatinine is, what your white cell count is usually. You’ve had enough MRIs and CT scans that you know that little mass under your gallbladder is benign and not causing any damage, and you’ve named it Harry. And to these doctors who acknowledge our experiences and knowledge, we thank you.

But come on, guys, you’ve got to do better.

There’s a reason it takes us years, even decades to get our diagnoses. I’ve got so many friends who clearly had a chronic health condition that kept getting brushed off as conversion disorder (basically, your brain tricking your body into thinking a set of symptoms is real). Even more who are dismissed entirely as false. I’ve got friends who need a diagnosis who haven’t been to a doctor in years because of the stress and anxiety around “will this doctor actually listen to me, or will they be like all the rest?”

It took me around seven years to get my diagnoses. Not including emergency room visits, I saw at least a dozen doctors in that time. It was a pretty even split between doctors who took one look at a history of mental health issues and blamed everything on that, and doctors who decided only one single symptom was valid. And this isn’t an unusual story.

According to an AARDA (American Autoimmune Related Diseases Association) study, it was found that it usually takes almost 5 years to get a diagnosis for a serious autoimmune disease, with the average patient having seen five doctors. 46% of those patients had their concerns dismissed. They were told they were “chronic complainers” or “too concerned about their health.” And even though most autoimmune conditions have a genetic component, most doctors’ offices don’t ask whether there’s a family history of autoimmune disease.

And this is just talking about serious autoimmune conditions.

Less serious autoimmune conditions and other health issues can take even longer to get diagnosed. The Immune Deficiency Foundation has estimated that between the onset of symptoms and an immunodeficiency diagnosis, it takes an average of 9 to 15 years to get there.

None of this even factors in the financial and social cost that comes with struggling to get a diagnosis for a chronic health issue. If you’re a student, your school life suffers. Your attendance and grades slip as your health gets harder to deal with. If you’re working, jobs deem you “unreliable.” But hey, you need to figure it out, because you rely on your employer for your health insurance. Can’t get the diagnosis you need if you can’t see any doctors, right? Your social circle becomes smaller and smaller as more and more people don’t want to hang out with someone who might flake at the last minute. And don’t even mention all the copays for office visits and lab work and scans.

All of this becomes that much more difficult if you’re a woman, person of color, or transgender. If it’s been so difficult for me, a cis white man, imagine how much worse so many others have it.

When you’re told enough times your health issues are fake, you start to believe it.

But they’re not fake. You know better than your doctor. You know your body. The debilitating pain in your joints is real. The chronic migraines. The constant digestive issues (yes, I know it’s gross, but it’s a reality for many of us).

And this doesn’t stop once you get your diagnosis. There’s still that voice in the back of your head, saying “but what if you’re secretly faking it?”, even though you have irrefutable test results that say you’re not. And it doesn’t help that every time you need to see a doctor who isn’t a part of your core team it’s a coin flip as to whether they’ll take you seriously or not. But remember- if you’re a zebra like me, you know better than your doctor, until they’ve proven otherwise.

How many times have you felt you know better than your doctor? How many times have you had your experiences invalidated by a doctor? Things can be better, but we need things to change in medicine itself before that can happen.

Until next time,

-Nick

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Sources:

https://autoimmune.org/wp-content/uploads/2017/04/tips_for_auto_diagnosis.pdf

https://primaryimmune.org/about

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