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.