Ignoring vs. succumbing: Yes, there’s another option

December 14, 2012

Lying in bed, unable to sleep at 4am because I couldn’t stop thinking about a lovely woman who is slowly dying, I found the Twitter hashtag #EverydayAbleism.  And then I had the kind of profoundly insightful moment that only happens at 4am when Anti-Ableismyou can’t sleep.  Obviously at 4am it wasn’t all that insightful.  Still, I wanted to share that with you here.

A hashtag in Twitter is a way to call out a word or phrase, and to group it with other posts containing the same group or phrase.  #EverydayAbleism is being used for people to give examples of ableism they encounter throughout the course of a normal day.  It is frustrating and disheartening to read these examples, but it is also encouraging and empowering to see so many people calling attention to these wrongs, in an effort to educate people to correct their behavior.

As I read, I thought about how some people are mean, nasty, selfish, hateful, inconsiderate, or just plain assholes.  There are other people who are stupid or ill-informed.  But then there are those who just don’t get it.  I think these people honestly believe that if someone has a chronic, life-altering condition, there are only two ways to handle it:

  1. Ignore the problem and get on with life.
  2. Give in to the problem and give up friends, family, job, hobbies, etc.  Live off government handouts.  Rarely leave the house.

I think there are people who really do believe that you must either live as if the problem didn’t exist or else let it consume you entirely.  These people have never lived with such health conditions themselves, so they can only go by their own experiences.  If they get a cold, they move on with life.  If they get the flu, they lie the couch for a week until they feel better.  To them, this is what illness entails.  There is no middle ground for them.

It is easy to assume that anyone who exhibits ableism is a jerk, but I think that there are some who simply don’t get it.  They can’t understand that an illness can affect your life without halting your life.  It may be a waste of time to try to educate the assholes, but maybe we can education the deluded?

4 Comments | Educating, Insensitive, Rants | Permalink
Posted by chronicrants

Getting bullied by bureaucracy

November 25, 2012

I was never one of the cool kids in school.  That didn’t bother me at the time, and it doesn’t bother me now.  It’s just a fact.  I had friends, and they weren’t considered “cool” either.  I studied and mostly got good grades.  I wasn’t athletic.  I didn’t participate in any of the “cool” clubs.  I didn’t act, and even worse, I did stage crew.  Yeah, I was one of those kids.

On the other hand, I was never bullied or subjected to peer pressure.  I didn’t drink, and no one ever tried to get me to drink.  I didn’t smoke or do drugs, and no one ever offered them to me.  I wasn’t teased or harassed.  Well, there was the boy who used to tease me and chase me around the playground when we were 8, but in hindsight I realize he probably did that because he liked me.  And anyway, he stopped doing it after I kicked him in the groin one day.  Someone tried to cheat off my work once, but there was no pressure.  I just noticed him looking at my paper during a test, and I guess I could have hidden the paper from him.  I hated that class and did really badly in it, so I didn’t bother to hide paper, and was sort of gratified when I got a C.  I never did find out his grade, but I gather it wasn’t so good.

I got through my entire life (so far) without being bullied in any of the standard ways, but now I realize that I’m being bullied after all!  I’m being bullied by the insurance companies.  This may not be the person-to-person bullying that others have experienced, but it still feels personal.  My life is horribly disrupted.  I think about it far more than I’d like to.  I may lose my home.  I have to be public about certain parts of my life that I’d rather keep private.  I’m being told they don’t believe me (essentially) and that they won’t give me what was promised to me.  I’ve spent hours brooding over the situation, trying to come up with nonexistent solutions.  I have enlisted the help of someone else, but still the bullying continues.  Standing up for myself only seems to prolong the misery.

I’VE HAD ENOUGH!

There’s no perfect answer.  All I know is that I am sick (no pun intended) and tired (again, no pun intended) of being treated this way.  I want to get the benefits that I deserve!

My appeal was filed a week and a half ago.  By law the insurance company must respond (even if it’s only to ask for more time) within 45 days.  That puts it right at New Year’s Eve.  I don’t know what the new year will bring.  I hope, I desperately hope, I achingly hope that it does not bring more fighting.  But if I have to fight for my rights, then that’s what I’ll do.  Let’s hope it doesn’t come to that.

2 Comments | Decisions, Expectations, Frustration, Healthcare, Insensitive, Isolation, Rants | Permalink
Posted by chronicrants

Which treatment might have done it?

October 9, 2012

M scoffs at me when I refuse to try multiple treatments at once.  She thinks I’m just dragging my feet, trying to avoid being proactive.  The truth is, with other parts of my life that is totally true and she’s nail me.  But when it comes to medical treatments, she’s way off base – I just don’t want to have something work without knowing which treatment it is.  And if something goes wrong, I need to know which treatment it is then, too.

Today a relative asked me for the first time in a long time if my new diet is helping at all.  What could I say?  I explained that in some ways it’s definitely helping – the daily nausea is gone (woo hoo!)  On the other hand, my energy has also improved, and I’m certain that’s at least partly from one of the supplements I’m on.  But could it be from the diet too?

I’d broken my own rule and tried many things at once.  Unlike any time before, these multiple treatments were all recommended by my trusted naturopath, plus they were recommended in books I’d read and by people I’d met online.  Everyone said that this stuff was too important to wait, so it should be done simultaneously.  I believe they’re right, but that doesn’t lessen the mystery.

I’m continuing to spend a lot of time and effort following this new diet, because I’m sure that even if it’s not having an immediate effect, it will help in the long term.  As for the many, many supplements, I’ll continue those for now.  Something is working, and since I can’t be sure what it is, I don’t want to eliminate anything.  My naturopath’s plan is to remove me from all of them over time, and to even lessen the dietary restrictions, so I’m hopeful that one day it won’t matter at all what’s working.  Still, I’m curious: which treatment might be helping me?  And could one of them be slowing down my recovery?

2 Comments | Decisions, Expectations, Frustration, Insensitive, Medication, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

How sick is sick enough for you?

October 7, 2012

When I was a kid and my symptoms first started, a lot of people said that it was all in my head.  Doctors, nurses, teachers, friends, and family all expressed doubts at one point or another.  My mother was the only one who never doubted me.  I heard it so much that even I started to wonder myself.

After 11 years of symptoms, it was a relief to finally have a blood test as proof.  “Look world, it’s not in my head, it’s a real thing!”

Now I’m fighting the same fight again.  Only this time, instead of saying the pain isn’t real, people are saying it isn’t bad enough.  I keep wondering, how sick is sick enough?  What’s the limit?  What’s the definition?  My boss clearly didn’t think I was too sick to work.  Or maybe that was just wishful thinking on her part.  The long term disability insurance folks have said that they don’t think I’m too sick to work.  I’ve been spending months preparing the materials, bit by bit, to prove otherwise.  Now, I just found out that the MassHealth folks (our state medicaid system) also don’t think I’m too sick to work.  Now I have to figure out how to prove otherwise to them, too.  Of course, I’m expecting to get denied by the SSDI folks, since almost everyone is denied on their first try.  I just applied, but I’m pretty sure I’ll have to work on an appeal.  I got dumped by a doctor who’s tired of dealing with my expensive tests and extensive paperwork, and who was unwilling to state for the record that I’m too sick to work (even though he said it off the record many times.)  He told me to have another doctor do it.

Being this sick is the worst thing in my life.  Being unable to work is demoralizing and scary.  So what’s happening?  Instead of focusing on the positive parts of my life and trying to work through this crap, I’m forced to focus on the worst parts of this crap and explain and define it over and over again for all of the doubters.  I’m forced to examine and then reexamine the most negative parts of my life and lay them bare for strangers to judge me.  And they certainly do judge me.

I’m not the first person to go through this and I won’t be the last.  But at this moment, I may be the most irritated.  I just want to yell at all of those idiots, “If you don’t think I’m sick enough, then just how sick do you think I need to be?  How sick is sick enough?  How sick would you have to be to not be able to do your job?  How sick would your kid/parent/sibling/best friend need to be to not be able to work?”  Not that I think it would do any good.  I’m just tired of being judged.

6 Comments | Expectations, Frustration, Healthcare, Insensitive, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

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