Where’s the compassion?

September 29, 2011

Arrrgh!!  Some days are just so frustrating!

A lot of life is frustrating of course.  Fighting traffic, pushing through crowds, dealing with less-than-helpful customer support services, and fighting with uncooperative computers a la Office Space are typical daily frustrations.  But today I’m talking about people.

More specifically, I’m talking about people who lack compassion.  One day I wasn’t able to walk, so a friend and I did some shopping with me in a wheelchair, her pushing it.  There was the sweet teenager who saw us coming and ran ahead to open a door.  But then there was the woman who told us we were being too slow and rudely pushed her way past us.  Nice, huh?  Well, this second one is the type I’m talking about today.

In the last few days I’ve been hearing too many things, directly and indirectly, that demonstrate how much some people lack compassion.  There was the woman who told me, while talking about my health, that my “reputation is the most important thing.”  There’s a friend who needs an incredibly simple accommodation at work, he brought in the medical documentation, and he’s being given the runaround by his employer.  And non-health-related, there’s the person whose office scheduled a mandatory meeting for yesterday, the start of  Jewish holiday, and then gave her a hard time for leaving early to prepare for the holiday.

In many ways our culture is one of me, me, me.  Sometimes I see people thinking about the good of their neighborhood, the good of their community, or the good of society in general.  That’s a start.  Less often, I see people who try to put themselves in the places of their friends, neighbors, and colleagues and who try to truly understand their wants and needs.  It’s a shame; I really believe this world would be a better place if we all did that from time to time.  Yes, that sounds a bit Pollyanna-ish, but I believe it.  When an elderly woman comes onto the train with a cane, give up your seat.  And when a healthy-looking 20-something asks for your seat, believe they have a good reason, and give it up with a smile.  It’s possible you’ll make someone’s day just a bit easier.

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Health vs. Reputation: No Contest!

September 27, 2011

“The most important thing you have is your reputation.”

 

Yes, someone actually said that to me today, when we were talking about my health!  I was shocked.  I heard, “The most important thing you have is….” and I just assumed she’d end it with “your health.”  I can’t believe she didn’t!  I was talking to someone who works in a professional role dealing with employee health-related accommodations.  I wanted to figure out the whole short term disability thing.  She was saying that if I need it, I should do it.  It’s just that her reasoning was different from mine.  She was saying that it’s better that I take the time if I need it, than to stay in the job and let my work suffer.  She’s right.  She’s especially right because, legally, once I take disability they can’t fire me, but if I stay and do bad work, then they can fire me for sucking at my job (my words, not hers.)

 

She’s right, but shouldn’t the reasoning be that if I need the time I should take it, because the most important thing I have is my health, and I shouldn’t let it suffer for the sake of a job?  Shouldn’t it be that the insurance is there just for people like me, so we can use the time to get better?  Shouldn’t health always be more important than reputation?  I mean reputation matters (there’s no way I’d be writing this if my name was on this blog, for example), but isn’t it more important that we be healthy?

 

I guess everyone has different priorities.  Boy am I glad I don’t have hers!

 

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How do you explain “it”?

September 13, 2011

I came across this video today, and it got me thinking about the different levels of understanding that other people have.

 

Of course, the people who best understand what it’s like to live with chronic illnesses are the people who have chronic illnesses themselves.  If you’ve got them, you probably have a pretty good understanding of the difficulties, the unpredictability, the social isolation.  Yeah, fun stuff, right?

 

I’d say the next layer are the people who knew me back before the illnesses/symptoms.  These are the friends and family who don’t have CIs themselves, but they’ve watched me go through it.  They’ve been there for me, supported me, seen the ups and downs.  I may not tell them everything, but they know more than anyone else possibly could.  And they know what to expect.  They don’t get upset or even question if I have to cancel plans at the last minute.  They ask in advance if I need to sit down, if I need different food, if they can help in any way.  These people make it all more manageable.  Thank you.

 

Then there are the strangers who just assume they understand.  They don’t get it.  On good days, I try to educate them.  On not-so-good days, I just ignore them.  I’d love to educate everyone, but some days, it’s just not worth it.

 

Hardest of all, there are co-workers, acquaintances, and new friends.  These are the folks like in the video above.  They honestly want to understand, they truly try, and most often, they miserably fail.  They equate my illnesses with their recent bout of flu, they think my pain is like the time they sprained an ankle, they assume my exhaustion can be cured as theirs can, by going to bed early for some extra sleep.  They don’t see why my health problems are so different from theirs, why I can’t just push through the symptoms.  It’s harder to educate them because they are close enough to really care, so they offer too many unhelpful suggestions.  It’s important to educate them because I will keep coming into contact with them over and over.

 

Over the years I’ve gotten better at explaining my symptoms and limitations, but I still haven’t found a way to truly convey it all.  If anyone has any suggestions, I’d love to hear them.  In the meantime, I’ll just keep trying to get my point across, a little bit at a time.

 

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Leave a Comment » | Educating, Expectations, Frustration, Insensitive, Isolation, Kindness, Limitations, Rants, Raves, Support, Thoughtfulness, Unpredictable | Permalink
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No, we’re not all the same

September 8, 2011

I saw a story on the news the other night about a woman who went to McDonald’s with her two autistic sons and their service dog.  The store manager was there (though not working at the time) and told the woman that the dog was not allowed because they weren’t blind.  The mother offered to provide documentation, but the manager insisted that they leave.

There’s more to this story, but I want to focus on the common misconception that only people who are visibly disabled would need a service dog.  Invisible disabilities can make life easier in some ways, because you can “pass” for healthy.  On the other hand, invisible disabilities mean that people often don’t believe you have a problem.  And visible disabilities that are misunderstood?  You’re out of luck there too.  We need more education.  We need people to understand that service dogs are for people who are blind, and also for those who are autistic or suffering from PTSD or who have epilepsy.  There are many many more reasons why someone would have a service dog.  People need ways to learn this.

When I was in elementary school, maybe around 4th grade, we had a program on disabilities.  Someone came in and spoke to us.  They taught us how to sign the alphabet, and we had to communicate with each other that way.  We were blindfolded and led through the hallways by a classmate, trusting them to guide us safely.  We had our dominant hand tied behind our back, then were told to write with the other hand.  We learned what to do if someone has an epileptic seizure in front of us and what to do if a diabetic needs insulin.  This was long before I had any health problems of my own, and as far as I knew, none of my friends or family had any problems either (I was wrong, but hey, I was a kid – what did I know?)  Still, I paid attention.  Obviously this program had a real affect on me, because I remember it all these years later.  Imagine what would happen if we offered programs like these in each grade, adjusting the material for each age group.  Imagine how much more understanding the next generation would be!

People make a lot of incorrect assumptions.  Sometimes the person is at fault, but very often they just lack the knowledge needed to make informed decisions.  Let’s help them by giving them the knowledge they need.  Let’s educate them!

 

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