What do you do when the doctor doesn’t believe you? Never happens, right? Honestly, after years of dealing with the medical profession I think there are lots of doubters out there for a number of reasons and it’s frustrating. When you go to the doctor and tell them your symptoms they’re supposed to listen. Instead, many diagnose before they get all the information or completely dismiss what a patient is saying because it’s a lay person. Sadly, this can delay treatment and even harm the patient.
I am blessed to have a good doctor in my life who’s seen me for my asthma for over 20 years. Last year, he said to me “You know your asthma better than me. I only need to see you once a year. You know when you need to come in.” I almost fell out of my chair. First, he’s right. Since I don’t wheeze, I know when I’m having trouble breathing before I’m even at the office because it’s not obvious. Second, it was the first experience I’ve had with a physician where I knew he actually believed what I was saying and trusted me with my own health. That’s huge and it’s rare.
More often than not, patients have an experience like this: they go to the doctor with a list of symptoms. If their situation has been going on a while and they have no diagnosis, they’ve probably spent some quality time on Google. After being triaged by a nurse and telling the story, they have to repeat themselves all over again to a doctor (and at teaching hospital a resident as well). The doctor spends 10 minutes with the patient and then tells them that it can’t possibly be whatever they Googled because it’s not presenting exactly like the text-book says. If it’s something pain related, they may dismiss the patient all together thinking that it’s in the patient’s head or they’re a drug seeker. The patient leaves frustrated trying to figure out where to go next. How many of you have had that experience?
Here’s what to do when the doctor doesn’t believe you
Do your research– When you tell a doctor you found info on Google, they have no idea if you got it off of Web MD or the rare disease database so of course they don’t listen. I cited every little tidbit of information when I spoke to doctors and still do. Just two weeks ago, we were in a meeting with our neurologist and I mentioned the new classifications for Ehlers-Danlos syndrome. I had just watched a webinar. This gave me credibility and he listened to what I was saying.
Confront them– I have no problem looking a physician in the eye and telling them that I know my child better than they do, especially because she’s an anomaly. It took me a few years to figure out that I could do that. Remember, you or your insurance company is paying the physician. Essentially, they are working for you. If they’re not listening or dismissing you, challenge them and ask them why. You have nothing to lose.
Shop around for a primary physician– If yours won’t listen, get out of the practice now. Get recommendations from others. Look into concierge practices because generally, they are trying to provide better care. Find someone who will listen and help you connect the dots. We had to kiss a lot of frogs to find our pediatrician and while it’s not his job to diagnose, he is super helpful when we need a blood test, letter for school or a referral. There are good doctors out there, you just have to find them.
Get connected to the right specialists– Often you feel stuck with “the best doctor” for whatever ails you (this is common with pediatrics because there aren’t a lot of options). Guess what? You’re not. Don’t like your neurologist? Find another. We finally landed in a practice that is trying to figure out the root cause of my teen’s migraines instead of just throwing drugs at her. You’re not stuck in a practice. Get out.
Keep a journal- I’ve written about why it’s important to keep a migraine journal to figure out triggers but if you’re in a situation where you need to find answers and no one is listening, this is a great tool to have. In our journey to get a diagnosis, that meant we needed to be on top of every symptom and keep close tabs on when things were happening. When Rosie was misdiagnosed with Amplified Pain Syndrome, it was an easy conversation with our physical therapist. She didn’t have all the symptoms her AMPS kids had that gave us a little ammo to fight with doctors.
Ask for what you need- We’ve learned over the years that things have a pattern. If Rosie’s energy levels are at an all time low, her Ferratin levels may be down. So, I ask to run the test. Sure, over the years we’ve run some unnecessary tests to rule things out but I’ve been right a lot of the time. You know your body better than anyone else. Remember that.
Hopefully this has helped you. What are some more tips?