December 20, 2010

Suddenly Visible

I have invisible illnesses. I hear you already - "yes Jen, we ALL know that". But what I mean is, I'm USED to them being invisible, to looking 'normal' most of the time. I think we all know that the option to (sometimes) blend in can be useful.

But tonight, I lost that option. Maybe it was the fact that I wore dress flats all day (no cushion), or the bug that's robbed me of my appetite all week, or the cold snap that's been sandwiched between heat waves. Maybe it the toll of my recent anxiety problems - or maybe my joints just thought it would be a pip to mess with me. Whatever the cause, I know the result, and the result was a very public bout of suddenly becoming visible.

I guess I've been in a mood lately, and when I'm in a mood Shawn often resorts to forcing me to go shopping.  Strange as that sounds, he's an excellent shopping companion (even for shoes).  When I'm in a certain frame of mind (usually heading toward depressed), I'll do things like go to the mall, look at EVERYTHING, try on a million things, finally find the perfect [fill in the blank]...then get worked up trying to make a decision and walk away.  It used to drive my mom nuts.  I can't entirely explain it - I think it's a combination of feeling overwhelmed about the decision to spend money, guilt (call it pre-shopper's remorse), and even something that might be called self-loathing (I don't deserve [blank] for some reason).  Not an entirely awful frame of mind - it's probably better in the long run to avoid buying anything when I'm depressed than to engage in retail therapy - but sometimes it becomes a real problem, like when there's something I actually need.

So with my intermittent flares have come intermittent attitudes, and today Shawn shlepped with me to Target.

Target's usually a safe choice - I always find something, and something cheap.  At minimum, they always have cute socks in their dollar section and even the ones that look too small stretch for my clod-hoppers.  Cute socks always make me feel better.  Beyond that, they usually have something else that feels like a great bargain which also has a healing effect on me.  Lastly, they have things to entertain Shawn, so he basically gets his 'reward' while I'm getting my 'treatment'.

Shawn and I arrived and parked in a handicapped spot (side note - I just want to mention that in my experience, Target always has a good number of handicapped spots).  No muss, no fuss, just parked and went in.  We grabbed a cart - you never know what goodies you might find you can't live without in that store, best to be prepared to shlep them - and began a lap around the building.

A downside to shopping (one I'm sure you're all very familiar with) is that it involves some activities that aren't really Sjoggie-friendly.  Walking, standing, squatting, leaning, lifting, reading little print under big bad flourescents, even the issues that come with trying on clothes.  In particular, I've been finding lately that while walking too much can be an issue, the real risk is in standing.  I suspect it has something to do with the muscles around my joints and along my spine not being strong enough to adequately support my weight without compressing my joints.  Well sure enough, after lingering at a few displays in Target, my hips started to go.  A few minutes later the pain and stiffness began working its way up my spine.  And then it happened.

Clutching the handlebar of the shopping cart as a makeshift walker, I realized my legs weren't moving as fast as I willed them to.  Each step took twice as long as normal...then three times as long...and became more of a stiff-legged shuffle than a step.  Hunched over the cart and walking like a Barbie doll (the old ones, that did NOT have bendable knees), I began to notice something...strange...

My mom has significant medical problems herself, including limited mobility.  When we go to a store, the first thing she does is get a cart, and then as we go through the store she is conscious to try and stay to one side of the aisle, not stop in front of a walkway, and so on, because she knows she moves slowly and allows people to go around her.  When people do go around, there are some VERY subtle behaviors they unknowingly exhibit.  They usually stop their conversation, don't make eye contact with my mom or I, and walk with away with their heads just a little lower than when they approached.  My interpretation is that they are trying to be kind - they stop talking so it doesn't seem they are trying to rush her aside, avoid eye contact because of the obvious embarassment, and let their heads hang a bit as they fleetingly contemplate that it could be them someday.  We all do it, and my mom and I usually don't think too much of it.

As I Barbie shuffled my way down an aisle at tortoise speed looking for Shawn, I noticed someone pass me.  Then someone else passed me.  Then the two people walked side-by-side away from me.  Funny, I thought, I wonder why they walked by in single file...and I hadn't heard them talking as they approached.  Wait a minute...I turned around just in time to see two more people approach, fall silent, one by one pass me, and reunite as they walked, it can't be...yep, their heads a little lower than when they approached.  And don't ask me if they wore glasses - I wouldn't know, none of them made eye contact with me.

Oh My God.  Ohmygodohmygodohmygod.  Nonononono it can't be. 

Don't get me wrong, my fear wasn't "I've become my mom", it was "I'm visible.  All these people can see something's wrong".  I instinctively tried to straighten up, to move faster, or even to simply disappear down an aisle until I could pull it together and pretend to walk normally.  I can push it, get out of here, then limp to the car.  Or so I thought.  It seems this was one time I just did not have control over my body.  Like it or not, I had no choice but to slowly limp my way out of there, leaning on the cart.  Staying to the side so people could pass me.  Doing all the little things my mom always did to signal others that I understand why they're passing me and there's no hard feelings.  Except there were hard feelings - not toward other shoppers, they were being respectful - but toward my body, to my obviousness.  My cloak of invisibility fell off and I was exposed for the disabled person I was.  Unlike the times I choose to hang up my cloak, put my limitations on a platform, shine a spot light and show the world the Sjoggie Within, my cloak was torn from me and left in a crumpled pile on the floor.  Far from the carefully considered audiences I'm used to facing, or at least the faceless multitude who might "see" me on the web, there were real people, strangers, and possibly even neighbors, who were seeing a side of me I usually hide.

If I anticipate something like this happening, there are things I do to have some safety nets in place.  I usually keep Shawn closer to me instead of agreeing to find him in another section, hang near a bench or chair display, and so on.  Maybe I can't always avoid having an issue in public, but I can put up a good smoke screen.  Well, not this time.

I wasn't even JUST visible.  That's scary enough, but like I said there are times and situations I choose to reveal those things, where I'm in enough control to protect myself.  It's that I was SUDDENLY visible.  I didn't prepare for it, didn't even see it coming - it just happened.  And the reaction from others in the store said it all.  Instead of the usual skepticism I get for using a handicapped tag or taking advantage of whatever little conveniences are usually skipped by the young (elevators, carts instead of baskets, and so on), I was ACCEPTED as a disabled person.  Boy, if ever there were a time in my life I was NOT looking for acceptance, this was it.

I'd like to say I learned some great lesson from this.  That I came to a deeper understanding of my own body's battle, that I realized the need for more awareness in the general public, or that I found peace with my limitations.  But I can't, not yet.  I'm confused and raw.  I feel like a child walking into a new school - no one knows why I am the way I am, but boy can they see me clearly.  There's no background, context, or developed cloud of information to shelter me.  It's not "oh there's Jen, she has autoimmune conditions and reacts to the weather but sometimes she's fine", it's "that woman must have some disability, lets go around her so she can stay at her own pace".

And I suspect this is the beginning.  As I age and continue to live with the stresses in my life, my invisibility will fade.  I realize it will be gradual over a long period of time - that I'm not going to wake up tomorrow needing leg braces and crutches.  But it will happen (to some extent).  When I went from kid to teenager, and teen to college student; made those transitions from Miss to Ma'am and girl to lady, I remember moments when I said "well, I guess I really am an adult now".  Driving myself somewhere new the first time, taking my dad out for Father's Day and paying with my credit card, or figuring out how much I could afford to pay for rent on a new apartment - these were 'adult' moments.  Somehow I can't shake the feeling that this sudden visibility was an 'adult' moment in my medical lifetime.  I may have known in my head that gone are the days when I could get a sunburn, go outside in November without a jacket, or pull an all-nighter, but that's not the same.  I knew I couldn't do those things, so I didn't try, and therefore avoided proving it.  But I didn't know I wasn't going to be able to finish my trip to the store today.  That there would be a day when I couldn't make my body work temporarily out of sheer stuborn determination and accept the 'punishment' that would come later.

I have to say, growing up sucks.  Now pardon me while I try to put some velcro on this cloak so it can't slip off so easily next time...which just might work, if I could see it myself.


  1. When I had dysautonomia worse than I actually have it now (oddly, that one part of my own disabilities got, apparently, better, over time), I had times when I had to use a wheelchair or scooter, and times when I literally just collapsed in the middle of stores. I knew then that what was often "invisible" was going to sometimes be very visible, and I hated it. Yet, there was, in a strange way, some gratification in having people understand that, "yes, that woman has a disability or something wrong", rather than feeling like I was ABOUT to collapse, being surrounded by people who thought there was nothing wrong with me. It was like, when I collapsed, I received recognition for this invisible battle I was fighting every day all by myself. It was like all the time I spent bed-bound was now somehow not as invisible and as hidden from the world. In a way, a part of me appreciated the recognition of what was, really, suffering. But in another way, I felt like you do right now, and I hated being seen naked in my clothing, with the horrible truth so obvious, without having any choice about it. I totally understand where you are coming from. I don't think that my Sjogren's is as bad right now as it's ever going to be. I know that my Fibromyalgia and arthritis are not as bad right now as they could be. So I try to keep it in the back of my mind, that one day I won't, or might not be, as capable as I am right now of doing physical things, but mostly I try to live in the moment and not worry too much about what may come - or may not.

  2. I hate that this happened to you. This evening we had the pastor of our church over for coffee and dessert, and after sitting for two and a half hours, my body wouldn't stand. My hips got stuck halfway through the process. It was embarrassing, but at least I was in my own home, with people who know that yes I do have a problem. When it's in public, it's a pride issue. I want to yell at those polite people who are walking past me and accepting my inability to move faster... please stop looking at me... Can I just be invisible again... I'm 27. You were three years behind me. The worst is those old people that feel like they have some claim to aches and pains, and tell you to just wait til you're old like them, that you don't know aches and pains. I'm torn between replying with "I have Fibromyalgia, this gets worse, and my butt'll be in a wheelchair" or telling them to piss off... I usually just smile and hobble away.

    Its one thing to have to have the realization that "this just isn't going to happen for me right now" at home, when you can mourn the loss of the day/evening in your own space. But in public, it's almost like a panic thing. I hope someday that Paul is able to handle things as well as Shawn does. He's really great, but I think we need more time to get used to this to be able to really understand what my "limitations" are and what helps to diffuse the situation.

  3. I'm sorry you had to go through that moment of visibility. :o( In my bad moments I think about Philippians 4:13. A basic bible verse from childhood, but still a good one! I hope it gets better soon. :o)


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