When Personal Experience is Taken as a Recommendation
While I agree the title “Patient Expert” is valid and warranted for use in reference to many patients, most people (thankfully) understand that many of us are not medical professionals. When people message me about my experience with medications, I’m always quick to give disclosures:
- I am not a healthcare professional
- You should talk to your doctor about any changes you want to make
- Your asthma may vary—this treatment works great for me but it might not for you.
Fortunately, #2 is required with medication prescriptions.
A recent Facebook conversation
Recently, someone (“publicly”, but only to my Facebook friends) thanked me for “recommending” they try a specific medication that I’ve had decent success with for my asthma. Can I also add this was on a post about pizza? It’s since been deleted because it’s just not accurate -- or topical.
Anyways, I just didn’t know how to react. I did not want to get into a whole thing about how NO, a suggestion that it COULD BE AN OPTION, and to talk to your doctor, is not a recommendation. You know who recommends medicines? Doctors. Doctors who know you and your disease and have gone to medical school.
Your experience is not mine
It’s great to hear the experience of people taking medication. It can help you weigh the benefits and risks, and whether, if you get them, common side effects would be worth it to you. But in the end, your asthma may vary -- and will vary. And you should never take the experience of another patient as a recommendation to try a medication, especially if you’re doing perfectly fine on your current treatment plan.
Fortunately, it’s working great for them. It’s worked great for others I’ve told to speak to their doctors about it, too. But that is in no way a recommendation.
It’s difficult when I have to be so emphatic in ensuring people don’t misconstrue my trying to share my experience as “treatment advice”. Because it’s not. It’s coated in disclaimers which I feel I have to mention repeatedly; liberally peppered with the words “may” and “could” and “consider.”
I try to help people feel more supported, to learn about their asthma, to find resources. I tell them my experience, which involves certain medications—I tell them that I like a medication or a device, that may or may not work for them if their doctor even thinks it’s a good idea to try. It's all "scientific guessing" when it comes to asthma. I remind them what hasn’t worked for me and that it very well could for them. My experience is not yours, and I will emphatically tell you this because you, not me, are responsible for your choices.
YOU are your own “asthma expert”
While I am a “patient-expert”, and while I’m sure I know more about asthma than some doctors, I know nothing about your asthma. Sure, take my “recommendation” to make a duct tape inhaler holder, or travel with extra asthma medicine, or advocate for yourself (which are all just things you could consider, too), but when it comes to medication, I can tell you what I’ve experienced and nothing more. I am just a person who writes things on the internet, and has asthma, too. This goes for any other patient—unless they’re also your doctor.
And if that’s the case, that you have an ePatient doctor, how’d you get so lucky?!
How does your asthma change with the seasons?