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Monday, December 27, 2010

Safety and Stigma: my doctor's frustrating advice about school.

My doctor told me that I should tell "only people who need to know" about Van's epilepsy.   The reason he gave for this is that "a lot of people just don't understand" --the message being that we don't want to stigmatize him.  We don't want people to "be afraid of him."


So who needs to know?  Surely I don't plan to hang a sign around his neck that says "Kiss me, I have epilepsy,"  but really, how many of the people who care for him every day might find themselves in a scary situation if I hide it from them?  We are in a co-op nursery school where parents work in the classroom.  Does that mean we should tell the parents of every kid in his class?  The babysitter knows, but what about play dates?  The chances of a dramatic breakthrough seizure seem sort of low just now, but that, should it happen, might well devolve into a life threatening situation and quickly.  Do people still wear those medical alert bracelets anymore?  Do I need to get him one?

My dad told me a story once about a kid who worked for him (outdoors, out of the back of a truck, on a construction project) and who didn't tell him about a seizure disorder he had.  This guy had had a major traumatic head injury, and as a result had generalized seizures.  He had one on the job.

Picture this--you hire someone, take them out onto a job, and they "fall out" without warning.  What should you do?  Is this normal?  Is it life threatening?  What if you had sent the kid up a tree, or if he had been carrying a chainsaw?  Does he have an aura that would let him know to put the thing down?   Would you have hired him at all if you had known?

If these questions could have been addressed, a scary situation might easily have been normalized.  On the other hand, I'm sure he kept the information to himself, at least in part, out of fear that he might lose the job entirely.  Workplace exlusion is a real problem for people with epilepsy, and Pollyanna-ish ideas about "normalizing" it seem not to have made much of a dent in the problem.

I want to normalize epilepsy for Van, for me, and for everyone we know, but when doctors give advice like this, I wonder if the world is ready.  My own bias runs to desensitizing everyone by exposure, but Van is just one little guy.  Should I really throw my own son that hard against the brick wall of prejudice?  Is either of us that big?  Should it even be my decision to make?

I think about women who hide their pregnancies at work, and how much easier it is for everyone once the pregancy is announced.  Morning sickness is largely invisible, marginally controllable, predictable, and with a degree of understanding, pretty easy to handle in the workplace.  Sure, it's a challenge, but for the most part, nausea announces itself a few minutes before you toss your cookies on your keyboard, so as long as everyone understands why a colleague keeps running out of meetings, people can work around it.

The scenario looks much worse if the woman has to hide her condition. (and let's pretend we can't guess what's wrong with a 20-40 year old woman who feels rotten every morning and runs off the the restroom a couple of times each hour.)

Suzie suddenly disappears from meetings, shows up late for work, drops phone calls, looks green all day, what's going on?  Is she ill?  Addicted?  Crazy?  Eating disorder?  She's not pulling her weight.  She's suddenly unreliable.  She's pretending everything is ok, and praying no one finds her out--she might lose her job!  She might be stigmatized!

She fights her condition, ignores warning signs, and finally, barfs on the conference table.  This was completely preventable, right?  Humiliating, horrifying for co-workers, and now she's the talk of the office, and not in a good way.

The cutesy analogy breaks down though, with the very "normal" condition of pregnancy.  A pregnancy is something to celebrate.  Epilepsy is something to overcome.

So which is more dangerous, the secret or the truth?

1 comment:

  1. Yes, there is a HUGE stigma! Our son has Occipital Lobe Epilepsy as well. We found out last week that his preceptual vision in his RT eye is 20/400 from the seizures and his brain. He has them localized in his left occipital lobe and sometimes the spread to surrounding hemispheres of the brain. We are on Trileptal. :) -Ally