The Background

I haven’t asked my husband if it’s cool with him to write this blog, which I probably should have.  But I guess if he doesn’t like his personal business all up in yo face I can repent in leisure.  In reality, this blog isn’t about him, though some of this is his personal business, it’s about me.  And the way I perceived disabilities, and how I would handle them.  It’s about the friends and family that all of us have who struggle with what I now call “Invisible Disabilities”.  It’s about my struggle to deal with a loved one with an invisible illness.

When my husband was deployed to Iraq the first time, right at the beginning of Operation Iraqi Freedom in 2003, I told myself that I needed to be prepared for the possibility of his being injured.  That he might come back with less limbs than he’d left with.  I was cool with that.  I mean, you know, not like one would say, ‘Ice cream?  Okay, I’m cool with that…” but in that I would get past it.

I didn’t marry him for his body, though I could have, because clearly he’s super hot.   I mean, come on.  I gave it serious thought and realized that even if he was sans leg or whatever, we’d be fine.  I was around a lot of wives who couldn’t handle the pressure or the physical changes or something.  And they were out of there.

I knew that wouldn’t be me.

He returned from Iraq deployment number two, one right after another, in mid-2004.  He seemed to be generally okay.  Like a number of war veterans he was twitchy and nervous, expecting every box on the side of the road advertising a yard sale to be a improvised explosive device.  But, comparatively, it could have been much worse.  He survived relatively unscathed.

Or so we thought.

Fast forward ten years, to January of 2013.  My husband was feeling sick.  He missed a couple of days of work.  Being sick isn’t all that rare an occurrence for him.  In fact, it seems to happen more and more often as the years go by.  After perhaps two days of an average cold or something of that nature, he started to complain of an inability to breathe.  He went to the doctor.  They said it was viral and sent him home.  Another day or so passed and he told me he was going BACK to the doctor, something that is a rare occurrence.  That he had gone once was odd.  That he was going again was downright bizarre.  But he felt he wasn’t getting better but, in fact, was getting worse.

At the doctor an oxygen saturation test showed that he had the kind of oxygen saturation that spelled big fat trouble and he needed to hie himself off to the emergency room like yesterday.  What followed was a hospital nightmare where we were given such lovely options as ‘lung cancer’, ‘pulmonary embolism’ and even ‘heart attack’.  In the end, the doctor’s were stumped and they pumped him full of super powered anti-biotics and called it acute bronchitis.  Except that the meds didn’t work.  His breathing improved only marginally.  It was back to the doctor again.  Eventually, in lieu of an useful diagnosis of any kind, he was given the diagnosis of ‘asthma or something like that’, given an inhaler and sent on his way.  The inhaler didn’t work either.  It was on to steroids.

The Science and Junk

I don’t want to go on and on forever about this eight month journey we’ve been on, especially when his health really could be much worse.  I have friends struggling with terrible illnesses in their families and what is wrong with him, and how we finally got there, isn’t really the issue.  The issue is my perception of his ability to live life.  The long and short of it is, they still aren’t entirely certain what to do with his problems.  Undeniably he isn’t breathing like he should.  Finally, test after test led us to the understanding that his problem is not asthma, but constrictive bronchiolitis (intrinsic lung disease).  His small airways are full of scar tissue.

Constrictive bronchiolitis isn’t something people just get.  Especially healthy 36 year old men.  It comes as a result of something else.  Asbestos, mining, or, in his case Iraqi burn pits.  If you are really interested in what he is experiencing or the cause you can go to http://www.militarytimes.com/article/20100118/NEWS/1180318/DoD-shows-first-signs-acknowledging-burn-pit-woes

and http://www.wired.com/dangerroom/2012/05/burn-pits/

But again, that isn’t really the point of this blog.

The point is this.  My husband did come back from Iraq disabled.  It just took us a few years to notice.  His run times were getting steadily slower and his immune system seemed to be taking a few hard knocks.  But that could have been the process of getting older, and maybe he wasn’t getting enough sleep.  It wasn’t until it became severe that we even noticed.

Wherein I Show Myself to be a Bad Wife

Now he has an invisible illness.  A silent one.  He looks okay to me.  He looks okay to his boss.  He looks fine from the outside.  He even looks okay on an X-ray since small airway scarring is only visible with a biopsy.  But he’s not okay.

Over the months since January, actually over the years as this has progressed without my noticing, I’ve experienced the kind of annoyance that comes from being a healthy person faced with looking at a person who seems to be healthy but isn’t.  “I don’t feel good” or “I’m not well” starts to seem like a cop out when you hear it too many times and the person who is saying it looks like they aren’t sick.

His boss and coworkers think he’s making up being sick.  He’ll move his schedule around so that he can take a few more hours to make it in in the morning since he doesn’t feel well and they don’t love that.  After they hear, “I’m not feeling well,” for the fourth time in a month, it seems to lose a lot of validity.  Especially when he seems okay by the time he gets there.

But they don’t love him or live with him, like the rest of his family does.  But it’s just as hard for me to deal with.  I want him to do something, he says he doesn’t feel up to it and spends the afternoon lying on the couch, that pisses me off.  If I am not ever mindful of the reality of his health, I start to think he’s looking pretty lazy over there.

He doesn’t spend every day like that.   Sometimes he’s fine.  A lot of times he’s not.  But if I don’t think hard, every day, about the reality of it all, my inclination is to be annoyed that he won’t just come with me somewhere I want to go, or just do that thing I want him to do.  It’s so easy to slip into.

The same is true of all invisible disabilities.  Arthritis, chronic fatigue syndrome, lupus, fibromyalgia and the like.  It’s a difficult thing to remember that someone who looks just like you and me, isn’t the same on the inside.  That they aren’t just being obstinate when they don’t want to do yard work.  That “I don’t feel well” isn’t just an annoying familiar refrain.  It’s a reality they have to struggle with every day.

Just yesterday, I had to go somewhere and I didn’t want to go myself.  I tried to pry my husband off of the couch and he didn’t want to go.  He just laid there, looking miserable, not sick, just miserable, and said he didn’t feel up to it.

I got in the car, annoyed as all get out, and went to run my errands.  As I was driving, I had a sudden memory of a decade ago when I said to myself that if my husband came back from Iraq disabled that I would be fine with that.  That his physical abilities did not dictate our relationship.  Now, that resolve was being tested, and I had failed because it didn’t look like the disability I expected.  Because it doesn’t look like anything at all.  In a way, it would have been much easier if it was something I could see every day.  I would never forget if it was obvious every time I looked at him.

Instead, I have to think everyday and remind myself that he isn’t doing it on purpose.  It’s hard for both ends of a situation like this.  But I knew a long time ago that I’d be okay if he didn’t come back the same as he left, and now I need to remember that all the time and make it a truth.  I didn’t just mean some disabilities, a wheelchair or a lost limb, but if I meant everything that could happen to him there, I meant this too.

If you are the family member, friend or loved one with an issue like this, an Invisible Illness, it might be hard to remember every day.  Maybe you’re like me and the inclination is to be annoyed.  To think, ‘well, he could just pull it together if he really wanted’.  It’s hard to be a person that everyone looks at like a liar because they can’t see your illness.  And it’s hard to be a person who has to remember every day that illness comes in all kinds of packages.  Even hidden ones.

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