Jodi Enders, an MG patient advocate, shares how people living with MG can identify red flags in their care, advocate for themselves, and seek a stronger doctor-patient partnership.
Transcript
If you don’t feel like your MG doctor is responding and moving urgently enough for your MG symptoms for your health, not moving fast enough for you to feel comfortable and confident with the care, this is a huge red flag — and usually is a sign that I would just think you need to start the process of looking into other MG doctors.
I wouldn’t necessarily say switch — and I would never say switch MG doctors without having a transition, because you never want to be without an MG doctor for your safety. Regardless if your MG is in remission or if you have actively worsening symptoms, I think that — you know — it’s just like a relationship.
If communication is slow, if there’s dismissive qualities happening in communication with your doctor, just like a relationship — this is a red flag. You know — if it’s happening early on, there’s not much likeliness that it’s going to change. You know — especially you and your doctor aren’t like in a relationship.
Relationship — you know — that’s a it’s a professional relationship. You know — your doctor’s not changing for you. So they’re probably going to keep their same habits — the same way that they go about treatment. And it’s probably not going to change much in a few years.
So if especially from the beginning — you’re not liking your MG doctor — you’re seeing these red flags like you can’t reach your doctor when a symptom changes or your doctor is not being open to your experiences and what you’re saying is happening with yourself, they’re not acknowledging your experiences, they’re not acknowledging the research that you’re doing online, they’re not acknowledging your self-advocacy — those are all red flags.
And the right doctor doesn’t have to be an MG expert. Of course, we want an MG professional — but to find a fully perfectly versed MG expert is very unlikely. You know — MG is a rare condition, and almost all of the doctors and neurologists that treat numerous conditions.
And so your doctor might not be able to answer every single question for you perfectly. And they might not have every single answer as far as what’s the next course of action they want to do with your treatment.
No — just like yourself, they want to do the research to make decisions for you, and they can’t know everything off the bat.
But the main thing to pay attention to are red flags — not not having all the answers. A red flag is rushing appointments. Your questions are being brushed off. You can’t reach your doctor in urgent situations or in emergency situations when you need your doctor to, say, communicate with your other doctors.
All red flags — and you never want your care to feel one sided. You want your care to feel like a partnership.
