My relationship with internet research was complicated by success. I scoured medical research online for years, searching for (and ultimately finding) an explanation for some mysterious and painful neurological symptoms. Success! Sort of. It’s a long story -- too long for this post. The point is that my one-time diagnostic success may have made me unreasonably optimistic about the potential for internet research to help me.
I wish this was a clear-cut medical mystery with a happy ending, where the plucky heroine (me) uses dogged internet research to correctly diagnose herself in the face of all adversity. But it’s not that simple. Nothing is simple with autoimmune diseases.
Like a lot of people with RA, I have multiple autoimmune conditions and a complicated health picture. I am a hardwired investigator. Every symptom, test, diagnosis, or treatment sends me searching for information. I don’t bother reading content with questionable credibility. I go straight to peer-reviewed scientific papers.
Reading scientific research when you aren’t a scientist is ... painstaking. I don’t speak the language. I look up half the words. I meander down countless research rabbit holes. It is an interesting exercise as long as I don't look too closely at my main motivation, which is fear. Fear that I will suffer from the mistakes of fallible humans. Fear that a health care system grounded on profit motive won’t help me. Fear that I will live in chronic pain if I don’t actively advocate for myself.
Those fears are not unfounded. Misdiagnoses and medical errors are common. Doctors are mere mortals working in near-impossible conditions, and there’s little time for nuanced doctor-patient communication. The resulting information vacuum leaves patients like me feeling uninformed, alone, and scared. Information is free and abundant online. So I go there.
In my search for solutions to my neuropathic pain, I spent an absurd amount of time doing research --mostly well out of my depth. The problem was not finding information, it was comprehending it. It was gleaning which information served me, and how. It was trying to translate an avalanche of material I only sort of understood into some kind of helpful action.
Was it worth the time, all that research? While it was validating and a little thrilling to solve some part of a personal medical mystery, in the end, it didn’t really improve my health. There are no easy fixes for the conditions I worked so diligently to identify. Still, being an armchair medical detective helped me in a few important ways.
Doctors usually shift quickly from broad-brush explanations to more substantive dialogue when they gather that I know something about my conditions. This helps us make good use of limited appointment time.
I also benefit from a reassuring respect for the scientific process. On a bad day, the evolution of medical science looks like a plodding continuum, too infuriatingly slow to help in this lifetime. On a good day, it looks like a shining testament to human intelligence and perseverance.
Just a few decades ago, rheumatoid arthritis was a devastating and crippling disease. Now it’s not. I’m not saying RA is easy. I know for a fact it is not. I’m just saying dramatic progress has been made. It’s still being made. Scientists are hard at work. Real research with real implications for my health is unfolding every day. This gives me hope. It doesn’t fix the gaping fissures in our health care systems, but still I feed and water hope wherever I find it.
I won’t stop researching my health conditions online. It’s interesting and sometimes useful. But my approach to the bottomless well of information is shifting. I have to weigh the difficulty of living with unanswered questions against spending time I’ll never get back gathering information that probably won’t change anything.
These are sometimes hard calculations, especially given my one-time diagnostic success, and my lack of trust in the health care system, and my longing for good health. But years of experience have shown me that the likelihood of improving my own health with online research is remote. Information is not the same as wisdom.
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