Some rare diseases require extensive testing in order to effectively treat their complexities. As a patient with Duchenne muscular dystrophy (DMD), I understand how vital testing is in the care process since this disease impacts several muscle systems. However, there are moments when I feel more like a statistic than a person with some tests that seem unnecessary.

I’ve had x-rays done for bone density and my spine. The bone x-ray, a Dexa scan, requires that I briefly lay on a table as the scanner moves. However, that table at my hospital is on the opposite side of where I usually get transferred to in my bed, which I’m significantly more comfortable with. I’ve done the transfer for the scan before with a high level of anxiety and experienced hip pain afterward. Currently, I’m at a standstill as to whether I’ll keep doing this. 

For the spinal x-ray, the intended method to facilitate it is to get transferred out of my chair to another surface that resembles a box. The dilemma is that I lack the back or neck support my wheelchair provides me. I have virtually no ability to sit back up if I fall backward at all, which makes it unpleasant when I have to sit up without the comforting support. I’m able to do the x-ray seated, but this entails lifting the armrests that give me side support and attempting to fit a flat object around the back area to get a better picture. This again creates a scenario where my loss of balance is a little frightening.

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To get a more thorough image of my heart, I used to have an MRI. Being inside one of these machines is already claustrophobic enough, but for this test, I also had an IV in my arm and joint discomfort from laying on my back. Being in there for about an hour was agonizing. It’s been over a decade since I had my last MRI, and I exclusively do EKG tests now.

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Blood testing would seem to be a breeze compared to the other physically demanding procedures. I glanced over the data from blood work that was ordered earlier this year, and there were 19 different things that were being analyzed. There have been times when the person taking my blood sounded surprised at how much was being tested. I lose count of how many vials get hooked up to the needle. This is complicated even more by the fact that my veins are minuscule in size, and I need child-sized needles along with an ultrasound machine to find where to stick me. I feel like a pin cushion when this has to be done multiple times in one testing.

With the high volume of blood being drawn, there have been instances where I started to feel the physical effects. I’ve gotten light-headed and felt like I was on the verge of fainting a few times. On one occasion my blood pressure got so low I needed to drink several bottles of water to avoid being admitted to the hospital.

With the myriad tests that cause discomfort and a heightened sense of panic, I begin to question the logic of it all. It’s as if I’m some sort of Frankenstein-like lab experiment in my mind. I don’t think the pursuit of data should outweigh my well-being.

I’ve stopped doing some of these tests altogether, which took some convincing with my providers, who seemed to brush off the pleas to stop. If you’re a provider for a patient with a complex disorder, I believe you should be considerate and cognizant of what the individual is experiencing during “required” testing. 

Make a treatment and testing plan with the patient. Perhaps space the tests out so it’s not too much at one time. Question the need for some tests. Most importantly, treat the patient like a human being and not a number.