But you don’t look sick…

November 8, 2015

After my last visit to the hospital to have the trial stimulator removed (fail), I found an email from MU Health that provided me with access to my medical records on line.  This is fairly standard procedure these days.  I was curious about the doctor’s notes, so I read the charts regarding my visits with two different neurosurgeons.  Nothing terribly enlightening, yet I was struck by a line that read something like, “patient is sitting in no acute distress.”

I remember this visit.  My head was throbbing and I was irritated beyond belief that it had taken almost two hours for me to be seen.  I was patiently answering questions that I had already filled out on the forms that no one bothered to read, and I did not feel well at all.  Yet, in the past year and a half with this headache and almost 20 years of dealing with low back pain, I have acquired the ability to look like I am not in distress.

On one hand, this is a bonus.  A requirement, almost, to living as normal of a life as possible in the midst of chronic pain.  Yet, on the other hand, I don’t appear to be sick, so a lot of people… even professionals, like the neurosurgeons I have visited, probably wonder whether it really is as bad as I say it is.  Why wouldn’t they?  I’ve become a master of the “I’m fine resting face”.  I can do the grocery shopping, smiling and nodding at people I see, while cringing at the pain in my head or my back.  I can function.  I can laugh, and I can act like nothing is wrong.  I have had to learn how to do this.  Otherwise, I wouldn’t get anything done, or probably even get out of bed most days.

Please know, I do not wish for the kind of pain that would literally bring me to my knees, yet sometimes I wish the outside matched my insides so I did not feel the need to plead my case.  After all, who wants to insist that they are in pain?  Who wants to insist that it really is as bad as it is?  Who wants to look like someone trying to garner attention through illness?

What a weird deal.  I’m glad that I haven’t thrown in the proverbial towel, yet I am also saddened that this pain that hugs me like a second skin has inadvertently required me to mask my real self.

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One Response to “But you don’t look sick…”

  1. Lynne said

    Ali, that you’ve been unable to find relief from the pain is awful. To feel and/or be misunderstood in this situation is awful. I don’t know what else was in your record, but could it be possible the doctor meant “acute” in the medical sense of being the opposite of “chronic”? So that your presenting symptoms were not new but evidence of something long-term? Sending you hugs…Lynne

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