One of the questions that I have been asked the most recently is “What’s the difference between “doctor-shopping” and just advocating for yourself to get diagnosed properly?” I think the question comes in a time where accounts like mine exist; people who previously hid behind “raising awareness” and “finding one’s voice” are now being seen for what they’re truly doing: shopping for a diagnosis and manipulating the medical system (and the chronically ill community) in the process.
Before going any further, it probably makes sense to define what each of these terms means on a basic level. When someone is advocating for him or her self, the priority is getting diagnosed, period. The light at the end of the tunnel should answer the question, “Why don’t I feel well?” Someone who is pushing to get answers, because they believe something is wrong medically, isn’t concerned about that diagnosis being something specific, they just want to feel better.
However, when someone is “doctor-shopping”, they have an agenda. This person doesn’t respect the process of getting diagnosed, and either hasn’t found a doctor that they can trust enough to go through that process with, or they don’t have any intentions of actually putting in the work as a patient to get clear answers.
“But Becky? What do you mean as a patient I have to ‘put in work?”
Yes, you read that correctly. One of the biggest issues I’ve noticed in the online chronically ill community in the last few years is that there is a level of entitlement there that will only ever do one thing: prevent us from getting the answers we need to get help. This entitlement is why so many people are passive-aggressive towards those without chronic illness, why the anger towards clinicians is beyond reason, and why so many people are getting unnecessary medical treatments for conditions that could often be managed with slight modifications to lifestyle (diet, exercise, etc.).
But here’s the thing – as patients, as people, as creatures, however you view yourself, we have a responsibility to meet any scenario halfway. If we’re hungry, we can’t expect to magically be fed, we either need to cook or order delivery. If we need a haircut, we can’t expect our hair to magically get shorter, we either need to go to a salon or get a pair of scissors. And if we are sick, we can’t expect to magically be cured, we have to visit the doctor and follow his/her advice.
When patients start to feel entitled to not having to do the bare minimum required to manage one’s health, you start to see this BS narrative develop about how what they have is “more extreme” or “more rare”, or that #doctorsaredickheads. You start to see the Amazon lists filled with “nice to haves” vs. “can’t survive withouts” develop. And you start to see people believing that an Instagram meme will diagnose them better than the doctor that spent 57 years in medical school.
I mean, let’s talk about that for a minute. I know what it’s like to be short, because I’m short. I don’t, however, know what it’s like to be a doctor, because I’m not one. I’ve been sick forever and I have a lot of experience and exposure to resources that’ll help me, but I’d never be stupid enough to get in my own way when it comes to my health.
And yes, thinking I’m smarter than all doctors would get in my own way.
To make things a little easier to process, I decided to make a quick section that identifies the differences between someone who’s authentically trying to get better and someone who’s desperate to get a port.
Advocating for one’s self: desperate to feel better, will do whatever it takes to find a good doctor, complies with medical advice, voices concerns in a respectful way, tries out different treatments (even if it’s outside the box). Knows to look for a new doctor if current doctor is dismissive of symptoms or gives a throw-away dx (like Fibromyalgia or depression). Overall, the interest is to get better.
Doctor – shopping: Has an agenda. Believes after looking at a few memes or threads on social media that they have (fill in the blank) diagnosis, and won’t stop until they find a doctor who will give them that specific diagnosis. Doesn’t trust clinicians, won’t try basic recommendations to better health (i.e.: eat better, sleep, exercise, etc.). Has seen 10 doctors who gives same medical advice, but still not satisfied. Over-dramatizes symptoms to get more invasive treatments, etc. A huge red flag is when someone seeks out a boutique doctor, which many believe more quickly offer diagnoses that aren’t appropriate because the patient is paying them to do so.
I know it’s probably hard for people to see themselves when they are in situations, but basically, just don’t be full of shit. Be honest with yourself. Ask yourself why you aren’t satisfied with the medical advice you’ve received. Ask yourself why you want the diagnosis that “everyone” else has on social media. Is there a deeper issue? Are you seeking attention?
Being sick sucks and it’s hard. But some things take time and you have to be patient.