Bob and I have an appointment to see the doctor on Friday about my blood work and EKG results. When I say “Bob and I have an appointment,” I mean that Bob will be physically present, and that I will be present in the form of a letter that he will bring with him.

Going to the appointment alone was Bob’s idea. He said “It’s always stressful for you to go to the doctor, and this time, you’re dealing with the prospect of discussing tests that you don’t want to have. Since we’ve talked out all the options, why don’t I go to the doctor, discuss any additional test results, and then bring them home to you? Meanwhile, you can write a letter stating your thoughts, and I’ll give it to the doctor.”

Isn’t he a great husband? I think so, too.

So, I wrote and signed a statement giving the doctor permission to talk to Bob about anything related to my health and medical history. Then, I wrote the letter to my doctor. I want to share it on my blog because it provides an example of the way in which writing empowers me by giving me an alternative to sitting in an office, overwhelmed and unable to express myself properly.

Disclaimer: I am not a medical professional or a medical authority, and I am not advocating that anyone follow the path that I am following. What works for me won’t necessarily work for anyone else.

Here is the letter. Some of the information has come from previous posts, so parts of the letter will probably sound familiar to some of you. (I’ve left out my doctor’s name to protect her privacy.)

“Dear Doctor:

A word of explanation: I’m writing this letter because I find it much easier to say things in writing than in person. Because I’m autistic, conversation with even one other person is difficult. I cannot read nonverbal cues, so I can’t use the same kinds of “shortcuts” that neuro-typical people use to understand the meanings behind the words. My brain has to work very, very hard on words alone, and it gets tired very, very easily. After just a few minutes, I am “full,” and I can’t integrate any more information.

I want to let you know my thoughts about the ST depression on my EKG. I’ve done some research as to possible causes. While the ST depression could signal heart disease, I have no risk factors. I exercise regularly and have done so for all of my adult life. I don’t drink alcohol or coffee. I haven’t smoked a cigarette in thirty years. I have never been overweight. My blood pressure is always in the low-to-normal range. I have taken care to eat healthy food since my early 20s, and my diet presently consists of fruit, vegetables, chicken, fish, soy products, tahini, almond butter, whole grains, and very little salt. I have allergies and sensitivities to a wide range of foods, including dairy products, gluten, refined sugar, and hazelnuts. In addition to removing these foods from my diet, I have also removed the processed, high-fat, and high-salt foods that contribute to heart disease.

Other possible causes of an ST depression are:

1) An electrolyte imbalance
I don’t know yet whether an electrolyte problem will show up on the blood work you ordered, but I wouldn’t be surprised if it did. I take a multivitamin, but I do not take any supplements containing potassium, magnesium, or calcium.

2) Positional vertigo
I have a condition called severe gravitational insecurity, a problem with my vestibular system similar to positional vertigo.

3) Stress during the EKG itself
I have appreciated your sensitivity to my sensory needs and your willingness to learn how autism affects me. However, going to any public place is very stressful on my body, and coming to your office is no different. Part of being autistic is feeling that I am always in the range of an unforeseen sensory assault, whether auditory, visual, tactile, or olfactory. For me, auditory overload is a particularly significant problem. Because I have no ability to filter or prioritize auditory stimuli, I have started to use a noise-reduction headset, which has given me my first experience of “background noise.”

Unfortunately, during the EKG, I had no hearing protection, and the woman who administered the test talked continually. She talked mainly about her autistic son, a subject that would have interested me were I not about to have an EKG. When people talk and talk, without understanding that I have a great deal of difficulty processing speech, my nervous system response is extreme. I feel fearful and overstimulated to the point of panic. During my EKG, I was in a state of acute sensory overload. These kinds of responses have been shown to cause ST depressions in otherwise healthy people.

And of course, for some people, ST depressions are a normal part of an EKG, with no ill effects at all.

I understand that it’s your responsibility to suggest an echocardiogram and a cardiac stress test, so I want you understand the impact of these tests on my body. An echocardiogram may seem like a simple test to most people, but for me, going to the hospital, waiting in a room with other people, wearing a gown, having gel put on my body, and having a complete stranger do an ultrasound would put me out of commission for several days afterward. I don’t simply mean that I’d be fatigued. I’d be completely exhausted. I’d have bladder pain, neck soreness, stomach upset, nausea, migraine, and sleep disturbance. I would lose my appetite and my ability to focus. As you can imagine, a 3-5 hour cardiac stress test would amplify these responses by several orders of magnitude. I would be very sick and completely nonfunctional for a week or more.

Tasks that are simple to other people, like going to the grocery store or to the post office, are very difficult for me. Medical tests in a hospital are beyond difficult; they border on the impossible. Unless there is a clear medical need to go through them, I don’t see anything to be gained by having a procedure that is going to make me sick. Therefore, I am going to decline the echocardiogram and the cardiac stress test. I understand there is some risk involved in doing so, but there is also great risk to my well-being if I take the tests at all.

Regarding other medical tests, we’ve talked about scheduling a yearly physical, mammogram, and colonoscopy for the same month each year. While logically this plan makes sense, physically it would be a disaster. One test a month is all I can do, and I cannot have several scheduled in advance. I need to have one test and then recover before making the next appointment. I have started keeping a list of the dates of my tests so that I can see when I am due to have them again.

Because I’m having difficulty seeing clearly out of my glasses, my next medical visit is to the ophthalmologist in September. After that, I will consider having a mammogram, though the level of neurological stress involved is comparable to what would result from an echocardiogram. I definitely do not want to have a colonoscopy each year; my nervous system would have a very bad reaction to it, and I can’t go through it.

It might seem that I am making the wrong trade-offs here. It might seem that I am unwilling to go through a short period of “discomfort” in the service of finding out whether I have a treatable illness. However, please know that in the 50 years that I lived with undiagnosed autism, I drove myself mercilessly against my neurology in ways that have irreparably harmed me. At present, and for the foreseeable future, my most important priorities are to spare my nervous system undue stress and to improve my everyday quality of life—even if that life might be shortened for lack of the proper test at the proper time. I have given this matter a great deal of thought, and I know that this course is the best one for me.

All the best to you,

Rachel Cohen-Rottenberg”

© 2009 by Rachel Cohen-Rottenberg