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The dichotomy of patient health literacy

“You sure know a lot about your condition.”

Many patients with long-term illnesses have heard this. When it comes from a medical professional, it’s never a compliment. It’s a statement that is usually, at best, laced with disapproval.

The thing is, patients like me, who have long-term complex conditions, are encouraged to know a lot. As someone with CVID and other issues, I’ve attended seminars and patient Q&As with immunologists. There’s a bimonthly magazine. The numerous foundations devoted to primary immunodeficiency have a wealth of patient-focused educational materials at all literacy levels. I’ve been admonished over and over again that I need to be knowledgeable, that I need to advocate, and that I need to keep records. My treating doctors have also carefully instructed me on symptoms and red flags I need to know.

As a result, I know medical terminology to describe my diagnosed conditions. I know my T-cells from switched memory Bs. I know what my average peak flow meter readings are. I can read my routine labs and know what’s more or less normal for me. When I get treatment, I log the lot numbers on the bottles as I’ve been instructed to do. I know the meds I take and their dosages, and the meds I can’t take and why. Since I’ve had IVs every two weeks for years, I can point out that one pesky vein that always looks gorgeous but always blows. I can tell you that my cardiologist would like you to avoid local anesthetics with epinephrine. I know I’m not a doctor, and I don’t tell my treating physicians what to do. I’m a patient attempting to be informed and engaged in her own care.

My own doctors and illness advocacy organizations believe that patient knowledge and engagement are important. The federal Agency For Healthcare Research and Quality agrees, stating, “Health care works best when patients understand their conditions and choices and are actively engaged in their care.” Many organizations actively work to increase patients’ health literacy, sponsoring and hosting countless seminars and lessons. The Immune Deficiency Foundation even recently started handing out wallet cards that provide information on primary immunodeficiency to give to ER staff or new doctors. The hope is that even if doctors ignore us, they’ll read the cards.

In theory, health literacy allows us to advocate for ourselves. In practice, it often seems to work against us. “Extensive medical knowledge” or “good understanding of medical terminology” are actually considered symptoms of Munchhausen’s or Munchhausen’s by Proxy, and many medical professionals react with suspicion when you know the lingo.

Having several medical conditions is considered another red flag, despite the fact that many illnesses disrupt multiple body systems. CVID, for instance, is associated with comorbidities ranging from GI issues to lymphoma. That’s not something I, as a patient, decided for fun. Having multiple doctors is also seen as a problem, even though having several disparate conditions would obviously make this necessary – and some specialties are now extremely precise.

Doctor shopping is also on the list, without any consideration as to why people might change physicians. Sometimes a doctor just isn’t a good fit. Insurance provider networks change, doctors move, and other factors completely out of a patient’s control often necessitate a switch. In the past five years, I’ve lost several doctors who have left the area or the hospital system I use. There’s really nothing I could do about that.

Another red flag? “Arguing with doctors.” It’s documented that many serious conditions with objective medical evidence, ranging from various types of cancer to multiple sclerosis to primary immunodeficiency, often take years and visits to multiple doctors to finally diagnose. I’ve lived that truth. If patients didn’t argue and persist in such cases, it might cost them their lives. I’ve personally had to speak up when doctors have tried to prescribe medications I’m allergic to. I’ve been given the wrong med during infusions, so I now make sure to verify the name of the drug, the dose, and the rate at every treatment. I trust but verify, as they say, and if something’s amiss, shouldn’t I say something?

There’s a stark dichotomy—patients are expected to become informed advocates, ask questions, engage, and seek out medical professionals who can help them, but this evokes suspicion and hostility from other medical professionals.

How do you advocate for yourself when it’s seen as a problem? How do you seek care when doctors might react poorly because you’ve sought care? How do you proceed when basic knowledge about your own medical condition is seen as suspect? As a patient, it’s exhausting, and for many of us, it leads to increased distrust of doctors in general.

Undeniably, there are patients who claim they’ve “done their research,” but that research was some video by a fringe MLM TikTok influencer. There are “medical information” websites that are clearly not based on actual science. There are people who don’t understand what they’ve read. Regardless, viewing patients through a lens of cynicism and disbelief is incredibly detrimental to real people who need help. It also completely ignores the vast diversity of the patient population and their experiences. Someone who is frequently in treatment for a chronic condition may very well have far more medical literacy and awareness than someone who never even gets a cold, just through observation. When you have a condition that isn’t going away, and you receive treatment on a regular basis, you learn. It’s inevitable and quite necessary.

When you’re dealing with a complex patient with established treating physicians and documented diagnostics, try not to treat us with open contempt or suspicion because we know something about our own conditions. We need your help, not your animosity. We’ve been instructed to be active partners in our care for our own safety. Please don’t vilify us for it.

Denise Reich is a patient advocate.


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