Relationship with Clinicians

And I think that was an example of the one neurologist I had that, my father had colon cancer, and when that was on my history, the first thing that neurologist said is you need to get colonoscopy if you haven’t. And I thought, you know, that’s really what healthcare is about. Like, okay, I’m MS and I’ll deal with that, but he knows this and told me to do this, which made a ton of sense to me. So, I guess in some ways, I have felt some, I might, shouldn’t say this because my daughter and her husband are both in the healthcare field, but in some ways, I feel like I’ve been let down by the healthcare profession. I know there’s not anything they can do for a cure of the disease, but I think there are some things they could do to help me make my life living with MS a little better.

I continue to go to [INSTITUTION]. And I have protocols in place so that every year they're seeing me. And I'm happy. I love them, the same way I love everyone who's helping me and not helping me. But I do love them. They do a great job. I'm always looking forward to my next visit. Even if it means MRIs, going two or three hours in the thing, and doing a bunch of tests, and normally tell you you're not doing so good on things, I still love it.

So, then I said, OK, with this new neurologist, he's very, very comforting, but also very knowledgeable. And he did a lot of research. He did, also, talks. And he would stay. He was very current with all the new medicines. So, I figured, OK, I've now found a specialist that I really feel comfortable with. And when I would go into his office, he had all MS information. And so, I figured, OK, I'm in the right place now.  

He was a very straightforward doctor; I have never seen like that at all. But he made it a point that these are the five things that you need to take care of in your life. You need to be very positive about these are the things that you need. These are the medications you have to have. He actually had educated me about every medication, what I was having and why I was having it. So, I think that those small things really help. If the doctor is very open to you, and makes you understand things, that goes a long way. When you start you start believing a lot of things because what do you read and what are told, they map to each other, that really helps.

Neurologist in [PLACE] was a condescending S-O-B. And the way he put it to her was very poor, very scaring-- scary for both of us, very blunt, almost like he enjoyed. And that was one of the reasons we never went back to him and we searched for [INSTITUTION 1] doctors-- neurologist.
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INTERVIEWER: So, you've said you've been very happy with the doctors that you've had at [INSTITUTION 1] Can you talk a little bit more about that, like what's been positive about your experiences there? 

Well, I think it's their staff. Even if you call them, they're very helpful. It's not like they're trying to get you off the line quick. And the doctor does not seem to be in a hurry like he's in a time frame to get her out of his office. He's always been very patient with us. And there were several times where my son and my daughter came along, and my daughter-in-law came along to ask the doctor all kinds of questions that they had. 

They've been very patient. They're very nice to us. I can't say enough. It doesn't matter who it was contacted me, or I called down there or emailed. They're very patient with us and very nice. It's not like they want to get us off the line so they can do something else. 

The last appointment I had with him, he spent more time showing me pictures of his little dog and the squirrel he caught than he did saying anything about my disease. And I’m like, why am I paying this person if this is what’s going to happen? So, I didn’t go, and I didn’t go to a neurologist for like three years. I can’t see any difference in not going. He always wanted me to get MRIs. I hate getting MRIs. I’m claustrophobic. And the MRIs seemed to be the same, but my condition, my abilities or what you want to call them, my, what I am able to do, got worse, even though the MRI stayed the same. So, I was like, I don’t really care what the MRI shows. I care about what I can do or what I can’t do. But he used to sign me up for MRIs too, and I, he would never say he was going to do it. And I get a call from the MRI people, and I’d say, I’m not going to take, do the MRI. So, after the business with seeing his dog, like I say, I stopped there. It was probably three years. But I felt I needed a neurologist because I have a neurological disease, so I went back to the practice where the doctor was who went to [ORGANIZATION] and now have a neurologist who is fairly young, which I think is great. And she seems to be very easy to work with. She doesn’t press as much on the therapies.

I really did not click well with [NAME] because he's very [um] scientific, science focused, more about like how the drug interacts and how, you know, the drug works, instead of how I felt.
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And then I saw [NAME] at [INSTITUTION] in [LOCATION], and she just like talked to me like I was a person. And like she understood what I wanted. And she was like, "I don't want to do steroids like often unless you really, really need them." So she and I clicked really well. And I'm really happy that I found a doctor, finally, that I can click with. 

And I have come to find out that you can’t really go by someone else’s opinion. You can listen and validate the experience they had, but it doesn’t mean you’re going to have that same experience. The doctor that I see now, I know other friends who did not like him at all. As I said, I found out he had four teenagers, and we hit it off immediately. I like him. I feel like he trusts me and my instincts and my research, [um] and I trust him. And I just feel it was a very casual relationship. And [um] he’s not real, real over the top, and I don’t, not to mean that he’s not thorough, but he’s just somewhat laid back in my care. And I’m okay with that because I’m very proactive for myself. I like the fact that he listens to me and that he values the information I bring to the table regarding my own care. So, I’m very happy with who I’m with now. I’ve had varied experiences. I would say overall, they’ve all been pretty positive. But I think, you know, I have made it a priority to really establish relationships with all of my caretakers.

So my neurologist, he is very much he's old school, traditional, tell it like it is, don't beat around the bush.

You know, he's, when I was fat. He wasn't afraid to say, Hey, you're fat. It's not good for MS.

Lose weight. And he is, he's very, you know, terrible bedside manner. But that's, but I'm not looking for a friend of my neurologist. I want him to tell me, is my disease getting worse? Am I stable?

And I think he's one of the best at that. Now I am switching off of him, but that's because he's like 73, not because I don't think he's good, he's just old.

And I want to start building a relationship with someone that's gonna be around longer. My primary care is much more, much better bedside manner, much better. You know let's look at your labs, let's see where all of your cell counts are.

And you know, she's more of a, well, last time you were here, you weighed 160 pounds. Now you're up near 180.

What's going on? How do we change that?

Because you should change that. Um, but she does it in not a mean way. It's always a Yeah, you're right.

I don't know. I don't know how she does it. She's great. She's like, like I would go out and drink a beer with her because she can just talk about whatever. And she's able to bring her, she's able to make medicine relatable and talk about, you know, her experience with whatever it is. Um, I think it also helps that her sons are about, about my age.

They're a little bit younger than me, but they're still in the let's party all the time. Mindset.

So we can relate on that.

Identity affects the way people treat you and the way they might try to diagnose you if you've thought about those experiences and your identity in relation to your experiences.

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Yeah. I think that I'm really lucky, again, because, as an insider, right, I'm in the medical system, the hospital that I study at is going to take what's going on with me pretty seriously. So, I got the full workup right away after ignoring these symptoms for a week, right? When I went into the hospital, I had a diagnosis 24 hours later, and I think that's pretty rare. And I think about that a lot, that it's a big privilege that I am a part of the system and that it helps me with my care. So, I don't know, it's a tough question, that I think it can be really challenging to be taken seriously with these sometimes pretty subtle neurologic things like, “Oh, my foot's tingling a little bit. It hasn't always done that. Maybe it's nothing. Can you look into it?” And they're like, “No, it's nothing. You're fine.” So yeah. I don't know if I have too much more insight, except for the self-realization that, my case, I was really fortunate.