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Getting a Diagnosis Shouldn't Depend on How Much Knowledge You Have

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When I was first researching my illness, postural orthostatic tachycardia syndrome (POTS), I came across a sentence in a medical journal by Welford and McKenna that made me uneasy: the majority of those with a diagnosis of POTS are well-educated (to degree level) and are more likely to “persist in their quest for answers when limited by fatigue and reduced performance capacity.”

At the time, I had been searching for answers for my “mystery” illness for over a year with little help from my GP who thought I was just another drug using graduate student. As a student, reading research papers was no big deal; I had been doing it for years and medical journals were easier to understand than the physical chemistry papers I had been reading previously. As in the observation by Welford and McKenna, I persisted with my doctors until I got a diagnosis. Eventually, I managed to get a referral to a cardiologist which led to a diagnosis of POTS. Unfortunately, I still lost my place at university due to the delay in getting adequate treatment in time.

I’ve always wondered what would have happened to me if I hadn’t pestered that doctor for a referral.

What if I didn’t have the educational background that allowed me to read and understand research papers?

Would I have ended up bedridden for the rest of my life?

Would I have died from falling down the stairs or a similar syncope-induced accident?

These are the thoughts that circle my brain and keep me up at night.

I think about those who are misdiagnosed with anxiety or the equivalent instead of POTS, and like most people, probably didn’t even think twice when their doctor diagnosed them. I too, was misdiagnosed at the start of my illness with “post-viral fatigue,” but that diagnosis didn’t feel right, which is why I was reading medical journals in the first place.

Unlike other illnesses, POTS needs to be carefully managed, often using a combination of pharmacological and non-pharmacological techniques. You can’t just take one pill and have all the symptoms vanish overnight. POTS affects many different bodily systems and presents differently in each person. The core symptoms are hard to ignore and can often be life-changing: tachycardia (usually an increase of 30+ bpm upon standing), syncope or pre-syncope and debilitating fatigue. These are not caused by drug use or anxiety. These are caused by POTS which can actually be diagnosed in a standard 15-minute appointment. The route to a diagnosis of POTS is often pushed onto the patient as it is not recognized by frontline medical staff such as GPs and emergency room doctors. This means that patients are forced to advocate for themselves, even though they may not have the tools to do so (like having a medical degree or degree level science knowledge).

Maybe those researchers are correct in their conclusion that those who have a certain level of education are more likely to challenge their doctors. However, I’m sure there are those without degrees who do the same.

Do I feel more confident going into appointments after I’ve researched my illness? Yes. However, anyone can google their symptoms and understand the abstract of a medical journal. That’s how I knew I had POTS before I was even diagnosed.

You shouldn’t need a degree to get the correct diagnosis.

Your doctor should be able to diagnose you or refer you to someone who can without you having to persistently question them.

Originally published: August 18, 2019
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