Interview with Dr. Linda Bluestein about her new educational program for people with EDS

 

Maximizing Your Medical Appointments

As part of our monthly Funny Bone Newsletter, journalist Karina Sturm had the pleasure of speaking with Dr. Linda Bluestein, a fellow Zebra, but at the same time also a doctor who recently released a new resource for people with Ehlers-Danlos syndrome: the educational program Maximizing Your Medical Appointments. Together with Keeya Steel aka “Hell’s Bells and Mast Cells,” Dr. Bluestein put together a course, featuring seven videos to help patients to prepare for appointments and connect with their doctors. For our readers, we wanted to find out more about this new resource and spoke to Dr. Bluestein.

 

Karina Sturm:

Dr. Bluestein, thanks so much for taking the time to speak with me today.  You have EDS yourself, treat people with EDS in your office, while you still manage to put together a podcast. Now, you created this new educational course for people with EDS. Can you tell me more about the motivation behind it and why you felt there is a need for this course?

Dr. Linda Bluestein:

Sure. So as a complex patient myself – even as a physician – I have a really hard time getting what I need from my appointments. I have ended up doing all of my own care. And really, it’s just so hard in the current medical system, and I think that’s a worldwide issue. I hear from English-speaking people – I don’t speak any other languages – all over the world how frustrated they are. This is not a US problem. This is, I believe, a universal problem that people have.

Karina Sturm:

Yeah, definitely.

Dr. Linda Bluestein:

If you have an acute, really discrete problem, our health care is pretty good, but it is horrible if you have a chronic problem. And it is particularly horrible if you have a chronic problem that your doctor has difficulty relating to. For example, if they’ve never experienced any of the things that you’re describing. So I felt that there was a huge gap between what patients are experiencing and what health care professionals are able to do, able to provide.

Karina Sturm:

Well, I guess we probably need a course for healthcare professionals next on: How to talk to your patients?

Dr. Linda Bluestein:

Yes, absolutely.

Karina Sturm:

Can you tell me a bit more about what this course entails? How many videos does it include, what is the content, and how did you build those videos?

Dr. Linda Bluestein:

Right. The course was Keeya Steele’s (Hell’s Bells and Mast Cells) idea. She did the majority of the heavy lifting. She had very specific ideas about how to record the videos, and she had been in a documentary, so she knew a lot of the best ways to record things and how to capture the audience. She actually drove to my house, even though she lives about three and a half hours away from me. We recorded a lot of the content together, and then some of it, we recorded separately, which was a lot harder for me, with lots of outtakes. (Laughs).

I’m good at being in the physician’s shoes, but sometimes I forget to put myself back in the patient’s shoes because I can mostly do everything I might need for myself; I’m not dependent on healthcare professionals like most patients are. So it was very helpful to have Keeya as a constant reminder that most people don’t have those advantages.

Karina Sturm:

Thanks for bringing this up! This was a question I wanted to ask you anyway. So you worked together because one person has the doctor’s perspective, and the other person brings in the patient’s view?

Dr. Linda Bluestein:

I met her through a mutual acquaintance, and we realized we were passionate about similar things. Then we started talking about creating this course. We spent a lot of time thinking about and processing how we could best progress. And yes, we felt this course would be very helpful. One of the key lines that Keeya has for the course is, “Doctors are trained to be doctors, but patients are not trained on how to be patients.” I think that is a really good line, which you can also flip on its head because, at the end of the day, we are all patients. Everyone will have a health issue at some point in their life, but not many of us know the other side of being the provider. So giving people a glimpse into what life is like as a provider might also help them to advocate for themselves and, at the same time, understand our  [physicians’] challenges better.

Karina Sturm:

Yeah, we need to create more empathy on both sides. I think that’s missing in healthcare a lot these days.

Dr. Linda Bluestein:

Exactly. People go in expecting help, and oftentimes, instead, they get traumatized. They get disbelieved, disregarded, dismissed. All of the ‘dises,’ and they leave disappointed. So they end up bringing those experiences into their future encounters. And if we go into a visit with angry energy, it negatively impacts the outcome.

Karina Sturm:

Yes, that’s very true. This reminds me of when I was searching for a diagnosis. Due to all my negative experiences, I was already sweating the moment I stepped foot into a new doctor’s office. I would be sitting in front of the doctor, ready to protect myself because I was expecting an attack. This didn’t stop until I got a diagnosis and allowed myself to trust doctors again. But this took many years.

Dr. Linda Bluestein:

Oh, my gosh. You know what? I have a talk on Saturday, which I should call “Restoring Trust.”

Karina Sturm:

I love it! So tell me: who should take this course? Who is it for?

Dr. Linda Bluestein:

It’s designed for people with complex chronic illnesses. I do believe, though, that pretty much anybody could benefit from this course. But people who really don’t need medical care, except for when they have an acute thing going on, wouldn’t really understand why this information is so important. It is really for people who are frustrated with their medical care. I remember the first time when a patient told me, “I was awake all night last night, crying, nervous about this appointment.” I felt so bad. I thought, “Oh, my God, I did that to you?” But no, previous people did that. And that’s when I learned about medically induced trauma. So the course is for people like that. It’s for people who have had medically induced trauma. It’s for people who have had lost faith in the system.

Karina Sturm:

What should your viewers be able to do after watching the videos? What do we learn from the course?

Dr. Linda Bluestein:

What I believe viewers should be able to do after taking part in the course is connect on a more human-to-human level with their physicians and other healthcare professionals and see each other, like you said, with more empathy. What we’re trying to do as patients is motivate our doctors to help us. And we shouldn’t have to do that, right? They should be motivated to help us anyway. But again, because the system is so broken, really, the more we can motivate them, the better – so connecting on that human level.

Karina Sturm:

What distinguishes your course from other online resources?

Dr. Linda Bluestein:

So when we were planning this course, we really didn’t find a whole lot of resources on this topic. In the meantime, I found a person on Instagram called Positively Chronic Travels, who has some really great content on her website. I thought she explained very well why you should, whenever possible, not go into an appointment saying, “I think I have XYZ.” It’s better to lead with what your symptoms are and let the doctor do the interpreting. But you can, towards the end of the appointment, say, “I’ve been doing some reading online, and I’m wondering if I could have XYZ.”  In terms of our course, we know that people learn different ways, right? So some people learn by reading, other people learn by watching a video or both. I feel like our videos are really helpful for people with brain fog who need to get the information in a different way.

Karina Sturm:

Can you give us a spoiler of some of the tips that you share in those videos?

Dr. Linda Bluestein:

One would be: It is very helpful for your health care providers if you create a one-sheet document with your medical problems. A lot of people, when I say that to them, they say, “Oh, I’ve got that.” And they pull out a binder. That’s not what we mean. When we [doctors] have limited time, we need the most critical pieces of information.

 

Dr Linda Bluestein with Keeya Steel

Karina Sturm:

That’s quite challenging. Our diagnoses alone fill a page. (Laughs).

Dr. Linda Bluestein:

I know this is a high-level request when I ask patients to take diagnoses off of their list. For example, I have basal cell skin cancer. I’ve had a ton of them. When I’m going to a doctor for EDS, they don’t care about that. It’s not important for them. However, for my dermatologist, this diagnosis is crucial! Another example: I had somebody entering 30 different allergies and intolerances before they even filled out my new patient form. However, could you maybe group them? If you have many environmental allergies, maybe you can summarize them as environmental allergies? Can you group other allergies into categories like grasses or foods? And then you could say, “See separate sheets,” and include a list with each allergy on these documents. But summarize the most critical information such as your medication, allergies and conditions on one or two pages.

Karina Sturm:

That’s very good advice. Do you have any other resources or options for the people who might not be able to afford your course?

Dr. Linda Bluestein:

Right. For instance, I do have my free podcast, of course, and actually, you’re giving me an idea that we should cover this topic on the podcast!

Karina Sturm:

That would be nice. I’d appreciate that. Here’s another idea. Maybe in the future, you could put together all those transcripts for the videos of the course and edit them down to a short booklet or something similar you could offer for like $15 on Amazon or wherever.

Dr. Linda Bluestein:

That’s a fantastic idea. That’s something I can easily discuss with Keeya.

Karina Sturm:

That is just a spontaneous idea, but I don’t want to keep you too long, but do you want to share what you’re up to in the future?

Dr. Linda Bluestein:

Soon, I’m going to be at a different location. I’m going to be in Colorado, in the Denver area, on a permanent basis. I’m also looking at unique ways I could offer to benefit the EDS population. I think some researchers are doing incredible work, and I’m really optimistic that things will improve. I’m also hopeful that I will be able to be heavily involved in those exciting developments.

Karina Sturm:

Oh, I’m sure you will be! And I am really curious now! Thanks for sharing all of this with me, and please keep me posted on all your new projects!

Dr. Linda Bluestein:

Of course! Thanks, Karina!

All videos in the course are captioned, and transcripts are available. More lessons will be added to the course over time.

You can access Maximizing Your Medical Appointments here:

https://hbmc-and-hypermobility-md.teachable.com/p/maximizing-your-appointments

(Now through April 30, they are offering the course to you for $149. Use coupon code BETTERAPPOINTMENTS at checkout: maximizingyourappointments.com)

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