The providers I see for Duchenne muscular dystrophy (DMD) are among some of the best in the country. While the expertise they offer can be invaluable and probably even life-saving, the clear delineation of knowledge about my disease between me and my doctors can have a few unintended consequences. I’ve felt like they were disappointed when I have doubts about following their advice. They have also seemingly made assumptions of how much I actually do know about DMD and its treatments.

An instance of the disappointment I mentioned that comes to mind is when I was uncomfortable with undergoing MRIs for my heart. This was mainly a problem during my pediatric and early-teen years. I’ve written before about this test and having to deal with stiff joints and small veins, which makes the use of a dye-infused IV for a clear image difficult. I can remember once having a near panic attack and on a separate occasion being almost berated by someone when they had trouble getting my IV inserted – as if that was something I could control.

When my family and I questioned the necessity of the MRI, the specialists in cardiology seemed to be confused as to why we’d turn down a test that could provide a more enlightening image of the heart when compared to a typical EKG. This conversation would persist for several years before my doctors came to accept that I would no longer participate in the MRI and strictly have EKGs done.

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I’ve also written about how much I loathe getting a sleep study done due to the discomfort me and my dad have experienced with it. Despite the fact that my BiPap ventilator has been combating breathing symptoms for years, the pulmonologist I saw in my most recent hospital follow-up this past October again suggested a sleep study. We compromised and decided to get the study data by using a pulse-ox device that goes on your finger for one night at home.

I believe this imbalance in medical knowledge can lead to another setback – where the providers just assume we’ll understand what they’re discussing. I went through a situation like this in my latest series of appointments, which involved my BiPap too. When the doctors analyzed the data card of recent readings for the device they were perplexed by how that said it was functioning. The pulmonologist and technician went back and forth about what the issue could be. Ultimately they thought it was simply a malfunction.

The next day my respiratory therapist came over to make some adjustments to the ventilator, which had been requested after the problem was discovered. From their perspective, the settings that the doctors programmed had been the culprit. I had some trouble comprehending this very technical information fully. Eventually, it was decided that the device was supposed to be set to an alternate mode. This hadn’t really been brought up with me before. That made me feel like I was expected to know this and therefore partly responsible for what happened.

Another assumption seemed to be made once by my neurologist concerning one of the medications I take. For anxiety, I have a daily dose of Prozac. When I mentioned that I was having reservations about its effectiveness my doctor asked if I had been taking it in the morning to get the most benefit. I had been taking it in the evening. Not being told this beforehand might have denied me some of the relief I was hoping for.

When providers have the power of expertise over their patients I suggest that they make sure to use it wisely. Try not to make them have a sense that forgoing a particular course of treatment is shameful in some way. If their decision is clear you probably shouldn’t repetitively inquire if they’re going to change their mind. You’re ultimately providing a service to them and should be open-minded about their desires. 

On the other hand, I expect providers to explain technical medical information in the best way for the patient to understand. Whenever it’s possible attempt to talk with them about the matter in simple terms. Even if this might be a challenge, make an effort to at least provide information pertaining to a potentially confusing topic.

Patients like me already have enough stressors. Try to treat your power of expert knowledge with a level of care similar to what your patients hope to receive.