No one likes to be invisible.
Even for an introvert like me, I still do not want to go through life
unnoticed. However sometimes we can be seen but not understood. For those who
suffer from Chiari like me, and countless other similar conditions, the very
real problem is that our condition is “invisible.” You would not be able to
tell by looking at me that my brain is currently 9mm beyond my skull and wreaking
havoc on my nervous system and causing pain beyond explanation. In fact, there
is a cruel irony for those of us who have suffered for so long when we become “good”
at it. That is, the longer we suffer, the less we look like we are suffering. I
have had the equivalent of a migraine headache every day for nearly 7 years
now. While I may have better or worse days throughout the week, my “new normal”
is likely a kind of headache that would make most people stay home sick. This
condition has led to periods of feeling great hopelessness – what hope for a
future is there when carrying my son for 15 min causes an intolerable headache –
but has also led me to gird up my loins and find out what kind of stuff I am
made of. I am determined that my condition will not define or own me and so, by
God’s good grace, I persevere.
Yet for me this means that I do not always look
like I’m in pain. I have gotten used to seeing everyone and everything with auras
around them, and little firework sparkles of light when I change what I am
looking at too quickly. I’ve learned to cope with deep nausea brought about by
sharp pains in my neck, or the feeling of someone driving a nail into the soft
tissue just beneath my skull when I bend over to pick something up. I’ve gotten
used to scorching hot flashes, general, aching nerve pain, and every day experiencing
that hit-by-a-bus feeling of jet lag and exhaustion that comes from a last
minute, 5-day, cross country, jet-lagged, whirlwind business trip but without
ever having taken that trip. Yet with such obstinacy to reflect my pain onto
others comes the problem that my condition becomes more undetectable to anyone
who does not know me. Sometimes people I work with every day will catch a
glimpse of me squinting with the blinds are opened or a noticeable decrease in
energy after a long meeting and will politely, though ignorantly, ask, “Do you
have a headache today?” I grin and just say yes, even though I want to
sarcastically say, “Really? ‘Today’?”
Do you know that feeling when you
go on vacation and come back to work and everyone asks you “how was your trip!?”
Each telling becomes less thrilling, less nostalgic, and likely less enjoyable
for you and your audience. What may have originally been answered with funny
anecdotes and pictures likely ends with “Oh it was fun. We really enjoyed it.
Did you get my email about such and such work issue that I sent you? Where do
we stand with that?” That is how someone suffering from an invisible ailment
feels every day when someone asks how they are feeling – when they are first
experiencing it and it is new and fresh and there is hope for a relatively
simple treatment, we will tell you all about it and what the doctors say and omg
how painful the headache is at the end of the day. After 7 years, dozens of
experimental treatments, and different doctors with letters behind their names
that stand for who knows what, your answers become bland. “Oh I’m doing okay.
Just trucking along. Did you get my email about such and such work issue? Where
do we stand with that?”
This desire to be strong and not
be a burden to others or not to be viewed with pity is almost paradoxical. The
more I attempt to be strong and hide it, the more energy I must expend, which
means the worse I feel by the end of the day and the less likely I am to “hide
it” to those who matter most to me and who really should be getting all that
energy I expended throughout the day – my wife and son.
