Before I got sick I shared the opinion that most healthy people have, the idea that doctors have all the answers and can always diagnose and treat illnesses. I had never experienced going to a doctor and having them not know what was wrong, or know what was wrong and not be able to do anything. If you had told me that I could go to a doctor terrified, slowly starving to death and crying in agony and have them tell me that it was all in my head, I would not have believed you.
Not being believed is one of the hardest things I’ve had to go through. It’s bizarre, too, because in life people generally believe you, right? I still don’t understand why I can go to a doctor who’s never met me before and their default position is to not believe me. I’m an honest person and I work hard to fight through hardships with as little help possible, so being treated like I’m a liar, complainer or drug-seeker hurts me on a deeply personal level. The frustration of telling my story, including embarrassing details, going through tests that are often humiliating and painful, and still having doctors dismiss me is beyond comprehension and more frustrating than I can explain. I’m sure many of you reading this have had the same experience.
Why is it so important to be believed? The most obvious reason is that if your doctor doesn’t believe you, you won’t get the proper care. In my case, even after my feeding tube was placed in 2014 and I mostly recovered from the malnutrition, I continued to feel terrible. I kept telling my doctors about the extreme chronic pain, fatigue and collection of other unexplained symptoms, but they told me it was most likely due to malnutrition, even though my labs were normal, and said “you’re very sick and have a feeding tube, you’re just not going to feel well.”
I couldn’t get anyone to take me seriously, so I started doing my own research. I even made a few suggestions and asked my PCP to refer me to a geneticist and/or rheumatologist, but she said, literally, “that’s a waste of your time, even if you have one of those conditions there’s nothing that can be done about it, so you’ll just end up going through needless tests.” It’s still hard for me to believe she actually said that.
I wasn’t to be deterred, however, because I knew something was wrong. I got involved with AGMD (the Association of Gastrointestinal Motility Disorders, my awesome support group), which helped point me to the right doctors. This summer I finally received an answer when I was diagnosed with Ehlers-Danlos Syndrome, a rare genetic condition, and other comorbid conditions, which explained my current health problems and the various health problems I’d been dealing with my whole life. Two different geneticists told me I had “walked right out of a textbook” and were annoyed that nobody had diagnosed me before (I learned later that it takes on average 20 years to be diagnosed with EDS because it’s so rare that most doctors haven’t heard of it, and many EDS patients are told “it’s all in your head,” like I was). I don’t dwell on this, but there’s no doubt that I could have avoided a lot of suffering if my doctors had taken me seriously.
The less obvious reason it’s important to be believed is the damage that not being believed inflicts upon your psyche. Having someone that you desperately need to trust and depend on, like a doctor, dismiss your suffering, is incredibly damaging. It can make you depressed, stressed out, defeated, and cause you to just give up. It can also make it difficult to trust others in the future. Being repeatedly dismissed can cause insidious little doubts that maybe the doctor is right. For example, as I mentioned, even though I knew I was right and something was very wrong, so many doctors dismissed me that I sometimes wondered if I was going crazy. I became very anxious about my doctor’s appointments and would often be unable to stop dwelling on how I had been treated.
Although I’ve now got several great doctors and am properly diagnosed, I’ve still got a lot of healing to do. I’m nervous that if I see a new doctor that I’ll have to go through this again. I’m anxious that if I see a doctor who hasn’t heard of my condition and doesn’t believe me, they’ll put an incorrect diagnosis in my notes that will affect my care. I still feel like I have to prove how sick I am, and I work to the point of exhaustion to prove to my doctors that I’m doing everything in my power to improve my situation just so they’ll believe me when I tell them how much pain I’m in.
Even though there are some doctors who don’t put empathy first, there are many doctors who know exactly what’s at stake and are heroes to those of us with chronic illnesses. The surgeon who performed my hysterectomy (due to severe endometriosis) is just one wonderful example of a doctor who’s getting it right. The first time I saw him, he came into the exam room, looked me right in the eye, put his hand on my arm and said, “I know you’re really suffering and that you’ve been in pain for a long time. Endometriosis is a horrible disease. I’m sorry you’ve had such a hard time; I’m going to try my best to help you.” I couldn’t believe my ears. I actually started crying. Although it’s taken years to find them, I have several doctors like this now, so they’re obviously out there. But why are they the exception to the rule?
I’d like to conclude with a plea to doctors. I understand that you see a lot of patients complaining of symptoms that turn out to be something run of the mill. You probably see some patients that are overly dramatic and even some hypochondriacs. Please don’t let this inure you to suffering or let it cause you to dismiss patients with complaints that you can’t easily identify. I know doctors are taught “when you hear hoofbeats, think horses, not zebras,” but zebras exist, and we need you to believe us in order to survive.