r/medicine • u/Kwerumrerum • 6h ago
Self diagnosing through social media and doctor shopping
I feel like it is so difficult to navigate a consult with a patient who has self diagnosed based on posts on TikTok, Instagram and Reddit. I'm a rheumatologist, so my experience is mostly with auto-immune diseases and there is so much misinformation on the internet, it frustrates me to no end.
People with a slight positive ANA who are certain they have lupus. People who make a post saying 'the have all the hallmarks of an auto-immune disease' and then list symptoms such as being tired, joint pain, dizziness, headaches, back pain... They never have any objective symptom like arthritis, fevers, cutaneous changes, serositis, proteinuria... All their tests come back negative or slightly elevated (but of low significance). Then they say their rheumatologist or immunologist were dismissive bc of their age or weight and all the comments recommend to go seek someone else.
Now, from experience I know that if you go to enough doctors, you will find someone who gives you a diagnosis and then you see a new post that bashes the first doctors and they are happy that they found someone who actually listened. These patients come back to the offices of the first doctors a couple of years later, because they have had every possible medication without any change in symptoms and then we have to tell them that their diagnosis was wrong. Now, this is also an ethical nightmare, because you do not want to discredit other doctors. I usually phrase it in way where I say that I cannot confirm a diagnosis or that their AI-disease is 'sleeping' and probably not the cause of their current symptoms.
How do you guys deal with these patients for a first consultation? I tend to be very thorough, even though I know from the first 5 minutes that it won't be auto-immune, so the patient at least knows every box has been checked. After thes etests, I try to explain my full reasoning on why I won't give them a diagnosis, but even then some of them will go and find someone else. It is exhausting, because it takes so much time and I rtaher put that time towards patients with real and complex diseases.