Friday, June 01, 2018

7 ways reentry is like invisible illness (or Why I prefer scorpion stings to visiting my passport country)


"...next to ignition or blast-off, the re entry phase is the most dangerous and difficult part of a space mission.."
From Craig Storti , The Art of Coming Home, pg 187 



Sudden excruciating pain stabbed into my foot and up my leg.

After flicking the light switch I saw the scorpion, lying, as if innocent, on the bedroom room floor.

“Am I going to die?” was my first thought; closely followed by “We need to take a photo for Facebook.”

No, I didn’t die, and yes, we did get a photo uploaded within minutes. It grabbed the attention of over fifty of my closest friends all around the world. It felt exotic and exciting. Although the sting stung, the memory of it is not painful, in fact I love talking about it.

A memory that is painful is that time my husband was dizzy.
For two years. For no reason.

Nothing was different about his appearance (compared to a healthy person), or even his medical tests, but everything was different for him, for both of us.

“When you get an invisible illness...your whole world alters. How you see yourself changes. But how the world sees you does not. Your illness is invisible to others, to doctors and to the government. The perils of not being seen can be life-threatening.”

Your world changes, but no one can see that. This description of invisible chronic illness sheds light on the reentry process, when you return to your passport country after years away.

Nothing is different about my appearance (compared to an Aussie who has been living in Australia) but everything is different for me.

Living with an invisible illness and going through reentry are both types of unseen pain, unlike a scorpion sting.

7 ways reentry and invisible illness are similar

1.You surprise everyone by not being able to do things they expect you can do.
In your previous life you could work and take care of yourself. Now despite appearances that’s all changed. Some parts take more effort than others, other parts impossible.  Debilitated and disorientated.
People in the supermarket expect you to know what to do.  Drivers expect you will know how to, and be able to cross the road.

2.You surprise yourself by not being able to do things you expect you can do.
Make a list of simple stuff to get done.
Try to do it.
Fail.
Feel surprised and frustrated.
Repeat.

3.You surprise others and yourself by not being what (you perceive) they expect you to be.
“Are you better yet? “
“Have you settled in yet?”
Both friendly well-meaning question but totally miss the magnitude of a chronic illness or an international move.
You need wade through the frustrations those questions might trigger, and see the good intentions behind them.  They know you’ve been to the doctor and/or had a debrief and they are wondering how it is all going.

4.Exhausted
Looking normal and healthy, but feeling tired all the time. Every little thing takes so much effort. You are busy working out a new normal, perhaps including how to sleep. Maybe the old normal way of sleeping isn’t an option anymore, so on top of it all you may be getting less quality sleep.

5.Even fun is hard work
Noticing you are tired and stressed, well-meaning people suggest you should take a break or to go out and have fun. But there is no way to take a break from yourself or your new life. Even ways of fun and relaxation have gone. It takes effort work out how to do it now.
So not only are you more stressed, but you also have no easy way to cope with stress like you did in your old life.

6.Trying not to sound like a broken record
Until recently things were easier and so so different, you can’t help but keep comparing. Every time you try to pay for something, or walk somewhere, it’s hard not to remember how different it is to before. Such a huge part of thought life, yet it feels like you shouldn’t keep boring everyone with “I used to know how to do laundry back in my host culture/before I got sick.”
And even if you do keep sharing this it becomes apparent people don’t really get that you feel like your arms have been chopped off.

7.Loss
You haven’t needed to go to a funeral, you still have all your limbs and your house has not burnt down. You look like anyone else but your normal routines of eating and sleeping are different, different ways of interacting with people and so much more that’s not mentioned here.
Unseen losses mean they might be unexpressed for years and may need to be unraveled somewhere down the track.

*********
“Whoa- that sounds painful!”
It’s easy for others to acknowledge a scorpion sting but they don’t use exclamation marks when you mention that you are dizzy/tired or that you moved from overseas 6 months ago.

When people don’t know or believe you are struggling it “magnifies the pain” (Metzger, 2016). Unseen pain such as reentry, invisible illness and a myriad of other things become even harder.
The sting lasted less than 24 hours, while the worst of the dizziness was 24 months and beyond, so the comparison only goes so far, but according to Metzger, baldness attracts more interest than chronic fatigue syndrome.

“...research into CFS/ME is small, especially when considering the number of people sick and how devastating it is.  “I had looked up male pattern baldness … $18 million for male pattern baldness [but only] $3 million for chronic fatigue syndrome, an illness that affects 1 million people in this country (USA) that has at least 25 percent of them out of work and on disability.” (from Metzger, 2016)

About five years on from when we were living in Australia, I’m still realizing just how hard it was.  We entered culture shock and sickness all at once, as I wrote about here: The Dizzy Monster.
It’s only in the last few years that I’ve been able to think about it. I’ve found it a relief to read other’s stories, such as this one here on Fruitful Today. Kristy writes about how her life changed when she got sick, including how hard it was to be part of church initially, and how different it is now.  If you are sick or someone you know of is sick you might find Fruitful Today useful too!

And here are some blogs on reentry:

And linking up with Velvet Ashes as this week is about Returning.

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