Friday, September 5, 2014

Awww, Nuts! People Just Don't Get PTSD

I know this is long but it's worth the read -- at least I think so.

Why, oh why, is Erin posting a blog about food allergies? Because contained within this blog post about a child's nearly fatal peanut allergy (which is very long and very moving) there was the following line:

"It’s going to be a long time before I’m over this, if ever, really. I spent the next week feeling like I had post traumatic stress disorder and I was the one that caused the trauma."
I can't possibly imagine what it's like to live with a serious food allergy. My Godson is severely allergic to fish (both shellfish and fin fish) and I've watched my best friend of 20 years religiously carry an EpiPen. I've seen her examine food and relentlessly question waiters at restaurants. I've watched my Godson burst into tears because he couldn't have something to eat at a party. He was terrified of going to my daughter's Sweet Sixteen because she wanted to hold it at a Japanese hibachi restaurant. And I watched his mother breathe a sigh of relief when we realized her party would be when he was at sleepover camp. Not only would he not be upset but his mom could actually have seafood for once without feeling guilty.

I do have a life-threatening allergy but it's to a medication, not a food. So I don't have to be quite so vigilant. But I do have to read the labels of seemingly innocuous items like eye drops and stomach medications because sometimes they sneak in small amounts of the (usually prescription) medication into over-the-counter drugs. Even touching a tablet causes swelling, itching and my throat will close up. When I worked in the pharmacy I had to carry Benadryl with me because we stocked several versions of the medication. I even got written up once for refusing to handle the drug. But a trip to the ER wasn't worth making my boss happy.

So I do, to some extent, understand how dangerous the situation is. But as my immediate family is food allergy free, I don't *really* get it. I'm never going to be in this mom's situation.

But just like I can't fully understand her situation, she can NOT understand what it's like to have PTSD, and her comment is insulting and ignorant.

I absolutely bet that this incident was traumatic for her whole family. I bet she was hypervigilant and sleepless. I bet she had a whole cartload of guilt over what happened.

But let me absolutely clear about something: having a couple of symptoms of post-traumatic stress for a week is NOT the same as having PTSD.

I would imagine that this mom routinely encounters people who innocently make off-the-cuff remarks that come across as insensitive, patronizing or otherwise offensive because of her son's health condition. Unfortunately, her comment about PTSD comes off the exact same way to someone with PTSD. A week of a few symptoms isn't PTSD. Heck, you can't even get a diagnosis of PTSD unless those symptoms have lasted more than a month. Until then, it's acute stress disorder.

I'd LOVE to only have to deal with my symptoms for a week -- just like I'm sure she would love to only deal with her son's food allergies for a single week.

This is what PTSD looks like for me:
* Nine medications (up to 19 tablets a day) to deal with my disorder.
* Side effects from those nine medications, which include extremity numbness, severe weight fluctuation, sun sensitivity, rhabdomyolysis (which attacked my cardiac muscles), dry mouth to the point that I went from NO cavities to nearly a dozen in six months.
* Night terrors that are so bad I have sprained my ankle, fallen out of bed, bruised my arms, and choked myself in my sleep.
* Hyper-vigilance, paranoia, unbridled aggression toward people I love.
* The inability to work or drive a car.
* The countless visits to neurologists, psychologists, psychiatrists and ERs
* The loss of friends and family because "can't deal" and who think "it's all in my head' and that I could "get better if I wanted to."
* Guilt and shame.
*The loss of sense of self.
* The loss of independence.
* Being constantly afraid.
* Being unable to sleep in my own bed for over a year.
* Spilling coffee on myself because a car backfired.
* Cowering in my seat at a baseball game because I didn't realize there would be fireworks.
* Wondering which is worse: the flashback or the embarrassment of freezing on the sidewalk, shaking and crying, and having everyone stare at you like you’re a freak.

This is what PTSD looks like EVERY DAY for me, and for others who suffer from it. It’s not going away in a week or a month or a year.

So comparing a week of post-traumatic stress symptoms to actually having PTSD would be like me comparing that one time when my ice cream didn't agree with my tummy to severe, life-threatening food allergies. It's NOT the same thing. It's not even in the same universe.

I get that this mom wanted to convey how serious food allergies are. But in doing so, she severely diminished what PTSD really is.

And this mentality is part of the reason I so strenuously object to dropping the "D" in PTSD. Having stress post-trauma is common. Developing PTSD isn't. A handful of nightmares and some hyper-vigilance is post-traumatic stress. It is not post-traumatic stress disorder. So casually labeling normal reactions as the same as a severe, disabling mental health condition does a grave injustice to those who have PTSD.

I get that PTSD is entering our language and our culture more and more. And that's a good thing. We desperately need to have these conversations. But talking about it like it's a condition that can develop from a bad waxing experience (no, I'm not kidding -- I wrote about that debacle a few months ago on my FB page) or that having a couple symptoms for a few days is analogous to actually having the full-blown disorder (one that claims the life of over 20 Veterans a day) only promulgates the myth that PTSD isn't really a big deal.

It is. It's hell.

Just ask any of us who actually have it, not those who just feel like they had it for a week.

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