When you have a medical ailment that requires urgent care, going to a local hospital is what many people would choose to do. This would probably appear to be a simple solution. But if you already have a complex condition, the practitioner you encounter may only have a layman level of knowledge of that condition. How you’re treated in emergency circumstances can have negative implications for your underlying condition. 

Living with Duchenne muscular dystrophy (DMD), I have experienced this on several occasions. 

This October will be 4 years since I had a broken arm, which I still remember vividly for more than the injury itself. My steroid medication brings with it a symptom of osteoporosis — increasing the risk of fractures. One morning I turned in bed and awkwardly landed on my arm. I heard a loud crack and the pain flooded into my nerves.

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My father managed to get me up a few hours later. At this point, we were frantically trying to determine what to do next. There was a local facility that was nearby we decided to visit. That rush to get out the door helped spur the other unfortunate events of the day.

My dad and I arrived at the emergency department of the hospital. Shortly after checking in my vitals were checked. The nurse seemed concerned that my blood pressure was low, but no other action was taken. While in the waiting room I started to feel noticeably light-headed. I quickly connected the dots. I was probably dehydrated since I hadn’t had any water that frantic morning. 

Read more about muscular dystrophy complications

It turns out that the combination of dehydration and low blood pressure is pretty dangerous. In severe cases, it can even be lethal because your organs are not receiving enough oxygen or nutrients. I also take a blood pressure medication, and the fragile state DMD already puts my body in certainly couldn’t help the situation.

I went over to the nurses’ station and asked for water and was denied because they told me having it could impact surgery on my arm if I needed it. Then I told my dad, and he seemed surprised. He asked the nurses if I could get water and was given the same explanation.

At this point, I was slumping over in my wheelchair. I couldn’t talk and felt my consciousness waning. My dad kept saying my name in panic, and I didn’t respond. When he began asking for water again, one of the nurses begrudgingly pointed out a nearby water cooler we could use… “If that’s what you’d like to do,” they said. 

My dad assisted me in drinking some water from a cup. Though not recovered, I felt better and the room slowly came back into focus. After this traumatic incident, the rest of my day at the hospital was fairly uneventful. 

A few days after this occurred we received a call from the hospital and were asked to complete a phone survey about the experience we had. My dad had answered, and he of course summarized the story I’ve told here. The person conducting the survey was disturbed by this and apologized. It was made a topic of conversation at the hospital’s next board meeting.

I was satisfied that what happened to me appeared to be taken seriously. However, it was disappointing that it could happen at all. The providers I interacted with at that moment blatantly overlooked a situation that was potentially life-threatening for me.

If a medical professional encounters a patient with a condition they’re unfamiliar with they should be open-minded when it comes to their unique needs. This means trusting what the patient or someone they’re with has a credible understanding of the disease.