When you have a rare disease, your medical care is likely specialized. In my case with Duchenne muscular dystrophy (DMD), this has created a unique circumstance in that I’ve been going to the same clinic for pediatric care and now adult care since few providers have such a deep understanding of my condition. This has been a major benefit in my overall health, but there isn’t always a clear delineation between pediatric and adult treatment in terms of communication.

First, I’ll go over how I feel seemingly invisible during consultations with doctors because they focus their attention on my parents. Eye contact is one of the more notable ways I’ve observed this taking place. Sometimes when a provider asks me a question, rather than looking me in the eye, they’ll immediately glance at one of my parents as if I’m incapable of answering. This literally makes me feel unseen as a patient and that my parent’s opinion is more critical as if I’m still a child.

Another area I’d like to mention is the tone of voice. I remember a recent occasion when someone was doing a questionnaire and talking about my vitals ahead of the specialists coming to the room. They talked in a playful manner that would be more appropriate for a young child. 

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I’m more comfortable with messaging my providers through email. I find that this makes it easier for me to have my own agency as an adult when it comes to making healthcare decisions. These days I usually accomplish this through the fairly universal MyChart hub and messaging system of personal medical information for a wide range of providers. 

However, this sometimes doesn’t work smoothly. I’ll get a phone call to the home phone number that has been used since I was younger, and my parents are the ones who manage that for me since I can’t access this phone easily. I realize that providing my cell number could remedy this somewhat since it’s much easier for me to use, but with the home number being in the system so long I’m not sure that would work 100% of the time.

A situation that occurred a couple months back was when I was scheduling an appointment to go to a clinic connected to the hospital for its mobility devices. I was looking to get my power wheelchair backrest re-tuned for my comfort. The home number was called to schedule this appointment, and of course my dad answers. Not only was this not the communication channel I prefer, but since I hadn’t been present in setting this up it was thought that I was trying to get a specialized car seat instead of a wheelchair fix. 

I feel though that there are some aspects of my care that are well-suited to an older patient. There are a few subjects I would rather keep private, such as my endocrine health. In this case, the provider asks if I would like my parents to leave the room. This also comes in handy when psychological topics and serious parts of my disease need to be discussed and evaluated. 

When I’m in the waiting room ahead of my scheduled appointments, I’ll usually be given a tablet where I answer screening questions related to my overall health. This can be a convenient option because it gives the patient a chance to independently communicate with their doctors without anyone else doing so for them.

In recent visits to the hospital, it has been suggested that I will have the opportunity to see a new neurologist — probably the specialist I coordinate with the most — who is familiar with adult patients and still has a good understanding of my disease. 

If I could advise providers dealing with this pediatric-to-adult limbo, I’d simply say that efficiently communicating with the patient will go a long way. Try to have a conversation with the patient about the preferred communication styles and channels. Also, make sure you’re staying up to date on your patient’s preferences. 

As a patient, I should be listened to and treated as an adult. I believe that can be as important as the quality of care I’ve been receiving.