Dissing discrimination

October 25, 2011

Are you discriminated against because of your illness(es)?  Have you seen it happen to others?

I read some tweets yesterday about people who are publicly discriminated against by strangers.  People spit on them!  I was horrified!  Now I’m wondering, is this common?  Have I been blind to it?

Most days I can “pass” as someone who is healthy, or as someone who appears to have an injury.  I have never been in a wheelchair for more than a few hours at a time (in an airport, at a mall) and those times have been rare.  When I was in a wheelchair some people were kind and held doors open, others were rude and verbally bashed me for blocking their path.  Many people were ruder than I would have expected, but I can’t imagine that they would do worse  But then, despite my cynicism, I still tend to give people too much credit.  Sad, isn’t it?  Anyway, most days I have a limp, or maybe have trouble opening a door, but for better or worse, most of my problems aren’t obvious to strangers.  I can hide them if I want to or need to.

So if this really happens as much as the tweeters implied, how have I not see it?  I know that I can be blind to many things in the world.  Sometimes I’m in my own head as I walk down the street, and don’t notice a friend walking the other way.  I drive someplace, and don’t remember how I got there.  I believe the tweeters.  I have no reason not to.  My main doubt is about myself: did I happen to not see a few incidents, or is some part of my brain intentionally ignoring the problem?  Are other people seeing it?  I’m guessing they don’t, or I would have heard more about it sooner.  Either way, it doesn’t matter.  Now that I’m aware of it, I’m going to pay more attention.  I hope you will too.  Have you seen this kind of thing?  Have you done anything about it?  Has it happened to you?

I hope you say no, that this hasn’t happened to you and you haven’t seen it.  But I know the reality.  It’s happened to someone.  My hope from now on is this: that it won’t happen anymore.  Let’s tell our friends and family and political representatives.  Society as a whole needs to have more respect.  It is not ok to treat each other like this.  We need to care about and support each other.  And we need to speak up when we see otherwise.  I know I will.

Note: When I mention speaking up, of course I recommend only doing this when it is completely safe to do so.  Please do not put yourself in danger in order to make this point.

2 Comments | Educating, Expectations, Insensitive, Intrusions, Isolation, Politics, Rants, Thoughtfulness | Permalink
Posted by chronicrants

Setting chronic illness goals

October 24, 2011

What’s your CI goal?

We all have different goals, of course.  There are the big picture goals, the ones that shape our lives.  For me, that’s spending time with family and friends, dating, keeping a full time job, and taking care of myself while living alone.  Some of these are easier than others at different times.  Sometimes these feel impossible.  But so far, they’re all doable.  Ok, maybe I can’t do them all simultaneously, but I’m working on it.

And then there are the illness-related goals that focus on the symptoms.  For me, that’s reducing the pain, finding ways to better relieve the pain when it hits, reducing fatigue, and removing weakness.  I suppose I’ve had these goals for so long that I’ve just taken them for granted.

Over the weekend I was talking with a friend who suffers from severe chronic pain.  She’s been using a form of exercise to try to ease the pain.  She told me that it started to work better when she stopped using it to get rid of the pain and instead thought of it as a way to reduce the pain.  I was shocked!  It never occurred to me that she was trying to get rid of the pain completely.  I guess it wouldn’t have mattered – I couldn’t have talked her into anything different because she wasn’t ready for it yet.  Still, I forgot what it was like to have hope that despite everything, it might one day go away.  I stopped thinking that way many years ago.

I’m happy for my friend that she has this new outlook.  Now, any reduction in pain is a success.  Maybe it will go away completely one day, maybe it won’t, but for now, she won’t feel like she’s failing at “curing” her symptoms.

I learned a long time ago that my pain would never go away.  It took a long time to accept that reality.  And then it went stopped!  I still have pain, but it used to be 24/7, and now it’s only on and off throughout any given day.  Some days I can almost ignore it completely.  This huge, amazing, unbelievable!  So I’m keeping an open mind and I know that anything is possible.  Still, my goal isn’t to get rid of any of my symptoms (except the weakness, which is almost definitely temporary.)  If I just focus on reducing them, then maybe they’ll go away and maybe not, but at least I could get to a point where they were liveable.  If I can live with them and still meet my big picture goals, then that’s good enough for me.  Hell, forget “good enough,” I’d be dancing in the streets with joy.

What about you?  What are your goals?  I’d love to know.  Make a comment below or send me an email.

Leave a Comment » | Decisions, Expectations, Limitations, Medication, Pain, Rants, Raves, Unpredictable | Permalink
Posted by chronicrants

Sharing… or not

October 23, 2011

I have to admit, I was feeling totally uninspired yesterday.  Sure, I could have written something.  I had plenty of topics.  I just didn’t feel like writing about any of them.  Then last night, I found myself getting plenty of inspiration.

I want to a small party where I knew some of the guests and didn’t know others.  Of course, a common question is, “What do you do?”  I had no problem answering that when I was simply unemployed.  For some reason, though, answering it now feels awkward.  I have a job, but I’m not working at it.  I was saying something about Friday and not being at work, and someone questioned me about it.  How do I answer?  My friends know what’s going on, but I don’t feel like discussing it with acquaintances or strangers.  Besides, the followup question would be to ask what health problems I have, and this is a party.  I really don’t want to talk about it at a party.  So I was vague.  Still, it felt awkward.

More awkward than that was the person who asked what allergies I have that cause me to ask about every ingredient in every dish.  I finally told her I have IBS.  It turns out, she has IBD.  Ok, similar but different.  She then proceed to tell me all about a book she had just read, and the diet it described.  Oh boy.  At least she has a similar condition, so that’s better than when people with no idea what they’re talking about decide to give advice.  But again, this is a party.  I don’t want to talk about symptoms and treatments.  I know she meant well, but it was too much.  I kept trying to change the subject, and she kept bringing it back around.  I think it’s worse when the person is well-meaning, because I don’t want to be rude.  Still, this is my life and my body and I really don’t need every Tom, Dick, and Jane advising me on it.

It was an interesting evening.  I had fun for the most part, but it was a good learning experience, especially for my new work situation.  In terms of the bigger picture, though, it was a huge success.  I spent over an hour baking, then rested, and was able to go to the party and feel good.  I was in pain from standing so much while we all talked, but I was able to do it.  I got down on the floor a bunch of times to play with the new puppy.  I didn’t have to leave too early.  Yes, this was definitely a successful evening!

Leave a Comment » | Educating, Frustration, Insensitive, Intrusions, Isolation, Job, Kindness, Rants, Raves, Symptoms | Permalink
Posted by chronicrants

An overly-cluttered slate

October 21, 2011

Posting to this site every day has been easier than I expected.  Of course, I have a wealth of material.  It’s not as if I was writing about some obscure topic; this is my life, so examples and topics are pretty easy to come by.

There are days when I’m stuck, of course.  That doesn’t happen much, but from time to time I just can’t think of anything that I want to write about.  More often, I have days like today when I can’t narrow it down.  Today I could write about odd genetic traits (having too much earwax runs in the family) or about big decisions (should I finally move to a more temperate climate?) or about friends who don’t get it (I was asked yesterday if I’m enjoying my “break,” as if a medical leave of absence was just a long vacation.)  Yes, there are many topics I could write about today.  I’m sure I will explore all of those at some point (I’m sure you’re at the edge of your seat, waiting to hear about the earwax) but today won’t be one of those times.  Today is an off day.  Today my brain isn’t interested in writing or exploring.  Today I’m going to let my thoughts glide over all of these topics without thinking too deeply about any of them.

We have to be sick every day.  We have to think about it every day.  We have to handle the symptoms and manage our lives around them every day.  So today I’m taking a day off from deeper thought.  I’m sure it’ll come back to me tomorrow.  For today, though, it’s nice to take a small “vacation.”

 

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Leave a Comment » | Decisions, Expectations, Limitations, Rants, Raves | Permalink
Posted by chronicrants

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