Friday, September 14, 2007

Invisible when...

So I've been living with my own special set of chronic illnesses for about 13 years now (ugh, next month is my sick-a-versary, again :( ), and they're unfortunately not as invisible as they used to be, because I'm not mobile without my wheelchair anymore, because I do show signs of my illnesses outwardly. However, there are still SO MANY TIMES that my illnesses make me feel invisible.

The theme of the week is that having a chronic invisible illness is a roller coaster : I sort of agree, in that any life has it's ups and downs. But the part about living with a chronic illness that feels most invisible to me is the in between times. Not the highs and lows, but the everyday, ordinary struggles that - just like with everybody else, disabled or not - I feel so many people don't see.

I feel most invisible on these ordinary days. On the "Oh, but you don't look sick" days.

In the times when all my friends are having housewarming parties and baptisms, and they (mostly) remember to invite me, but we all know I can't go.

When those same friends or family say things like "But it's only hair spray, and I put it on hours ago," or "But there's only three steps, and if you want, I can have my brother carry you up them," or "But the cat will stay in my room when you come over." Because they're not seeing me, not then.

Or when my sisters are planning nights out, and there's no question of me going. No contemplation of "would NTE like to go?" Because the answer, no matter how much I might like to, is going to be no - nighttime excursions are not on my menu, 28 years old or not.

It's when the funding for my disease gets funneled into some other disease's pockets, and there's no public outcry.

It's when I'm sitting in a restaurant, and the waiter asks my mother what I'd like for lunch.

It's when people don't see the effort it takes for me to show up to their party, talk to them coherently on the phone for an hour, or recognize the weeks I'll spend recuperating from a 'quick trip' to the store.

It's when taking care of the babies (whoever the babies are at the time, and however old they might be) wears me out so much that I have trouble breathing, thinking, eating, and yet that baby's parents always ask for "one more day" or stop by unexpectedly, not really seeing that taking care of their baby is what eats up most of my energy in the first place.

It's when the things that are a big deal to me - smells, visitors, germs - are ignored even by those closest to me.

It's when asking for what I need gets interpreted as being petty or overly selfish.

It's during the endless days of waiting and the parades of tests. When the people who love me get so sick of the non-answers - the only thing I've got to give them - that they just stop asking me how I am. As if I'm not just as frustrated, as if the not knowing isn't eating away at me too.

It's after a crisis has past - after I'm out of the hospital, or not throwing up on somebody's feet - and people seem to forget that I even exist. That I'm still here waiting.

It's when the get well cards stop coming, when there's no balloons or flowers. Or when there weren't any in the first place.

It's when somebody asks me what I do (for a living), and the only answer I can seem to come up with is "Survive."

It's when friends just disappear. Just fall away.

It's when I'm slogging through, trying to live, fighting for every moment, and nobody seems to notice.

These are the times I feel most invisible.

When don't I feel invisible?

Playing with those same babies, helping them learn & grow, or making them laugh.

Sitting in Zach's office, knowing that he's listening to every word, knowing that's he's trying.

When I know that anybody is listening - that they're interested and paying attention, and not just because it impacts them.

Writing here, knowing that people are listening - isn't that why you all write too?


JaniceNW said...

You are in my heart and mind ALL the time. I'm just sorry we love so far away from one another.

You are not invisible!!!!!

Maya's Granny said...

It has to be so difficult living with an illness that takes away so much of what you should still have.

I have a very bad back, and just fixing breakfast makes it ache. It isn't something that shows, and often when people at work are all doing some little task, pitching in, and it will lay me up to do anything like an equal share, I am stuck between doing what I can and knowing that people are wondering why I don't do my share and explaining to people, yet again, that it hurts. That is so small compared to what you live with.

Marilyn said...

Thank you for sharing this (at Tangled Wings)--it's a powerful reminder to all of us. Feeling invisible can be a truly painful feeling. I hope you've had the courage to share this post with the people close to you in your everyday 'real' life so they can see how you've been feeling. Blessings to you.