I Was a Misdiagnosed Twentysomething

# A guest post by John Robinson as a part of the How Real People Bust Out a series of guest contributors sharing their journey’s.

Getting used to rejection is one of the unintended benefits of being a writer.  Letters come, you shrug them off and send off the story to the next market.  However: nothing can really prepare you for getting a rejection letter from the Red Cross.

Here’s the scenario.

One day the Red Cross Bloodmobile was near work.  Having never given blood before I decided to give it a whirl.  I thought nothing of it: I have no issue with getting blood drawn and watched as they did their thing, strapped the bit of cotton to my arm to stop the flow and then sent me on my way with a bit of juice and a cookie for my troubles.

Days go past. I forgot I even gave blood.  Then, a letter arrived in the mail.  It said that the Red Cross tested my blood and found conflicting results for Hepatitis C.  Multiple tests showed I had it, though another test showed I did not.  The letter advised me that while they had to destroy my blood donation, as long as I felt fine, there was no need to be worried or even bother my doctor.  (I am paraphrasing–but that was the gist.)

Having a great affection for my own blood, I found myself worried regardless.  I phoned up my physician and arranged to get re-tested.  Long story short: the re-test came back positive.  I had Hepatitis C.  I was told there was really nothing to be done about it.  There was no cure and in fact there was nothing really to treat.  That is, unless the disease decided to become active and go after my liver, trying to destroy it–and by extension me, since I was (and still am) very attached to said liver.  This was in 1996.

For the next thirteen years I experienced both confusion and anxiety.  Confusion because the fact I had Hep C…simply made no sense.  The two most common ways of acquiring the disease are risky sex with unprotected partners (never a hobby of mine) or sharing needles (I’ve never taken illegal drugs of any kind–meet me, you’ll understand why).  Anxiety because me having a potentially terminal illness was one thing–but giving it to another person was something far different.  Every nosebleed was a reason to get even more paranoid than my personality usually calls for.

In 2009, I was preparing to leave my day job.  My wife, because she is wise, told me to go and get checked out for my Hep C in preparation for a new insurance company.  I went to a liver specialist and he shared my confusion.  After testing me for the virus itself and not just the antibodies, it was determined that I didn’t have it…and had never had it.  All the antibody tests that were positive was due to the fact that in the mid-90s, such tests were “notoriously inaccurate.”  My theory is that over those thirteen years, no one ever tested me for the virus itself.  They merely checked my liver chemistry, which was off due to the fact I was a bit overweight.  Downgrading my condition from “potentially terminal” to “needs to go down a few pants sizes” was a nice change of pace, admittedly.

I told a very small number of people about my condition, as I didn’t want anyone to feel like they had to don an Andromeda Strain suit just to give me a hug.  And I also didn’t want anyone worried about it.  I believed them when they said there was nothing to be done–so I went with it.  No need to worry anyone when nothing could be done.

After posting a video of my experience, two other people have come forward to say they had something similar happen.  So I urge people in such a situation to take me as a cautionary tale and ensure they have the right diagnosis.  Going through life afraid of something you don’t actually have is, to put it mildly, rather inconvenient.  And that closet I kept that particular skeleton in has since been converted into a recording booth.  Much more useful that way.

Meet John

John “Widgett” Robinson has been writing about pop culture for over 14 years.  He is the author of one novel (“Mystics on the Road to Vanishing Point”), one short story collection (“Magnificent Desolation”), and co-author of one children’s book (“There’s a Zombie in my Treehouse!”).  He also writes poetry and spoken word and performs regularly.  He serves as Chief Cook and Bottle Washer of Need Coffee Dot Com.  He lives and works in Atlanta, Georgia.  He hardly ever sleeps.