The oh-I-could-never-do-that response

September 17, 2012

Sometimes we do things that are hard.  Occasionally something is easy, but often it’s hard.  Very hard.  Damn hard.  We do it to improve our health.

So why do we do these difficult things?  Are we gluttons for punishment?  Do we enjoy the challenge?  Are we masochists?

Or are we people in pain?

Yeah, that’s what I thought.  The last one, right?  Me too.

And that’s why it pisses me off when someone hears that I’m eating a very restricted diet, or that I live with constant pain, or that buying groceries on a bad day is a huge effort, and their response is “Oh, I could never do that.”

At this point I figure they say this for one of two reasons (but please let me know if you think of another!):

  1. They don’t believe that my symptoms are as bad as I say they are.
  2. They can not possibly imagine how bad my symptoms are, because they have no frame of reference.

I want to believe that it is usually #2, that they just can’t imagine daily nausea that is so bad, you’re willing to cut your favorite foods out of your diet to be rid of it.  But really…. who couldn’t imagine that?  And if it’s #1, that just pisses me off to no end.  After all, these aren’t strangers, these are friends and family who are saying this.  They aren’t suggesting that it isn’t worth it for me to try these “drastic” measures of changing my diet or trying new supplements, but they say that they would never be able to do it.  Maybe they’re trying to suggest that they’re too weak to try and therefore I’m strong?  But in the context, that’s not how it sounds.  It sounds like the pain could never be so bad that it would be worth giving up desserts on the off chance that it might help.

So for all of you doubters out there, have someone whack you as hard as they can in the knee a few times with a hammer.  Now, would you rather have someone do that every hour, or would you rather give up chocolate forever?

Yeah, I thought so.

7 Comments | Educating, Frustration, Insensitive, Rants, Support | Permalink
Posted by chronicrants

Please don’t ask me how I am

September 6, 2012

“How are you?”

“What’s new?”

“How’s the insurance situation?”

“What’s happening with your treatments?”

“Do they expect you to improve?”

I know these questions come from a place of love, but for heaven’s sake, STOP ASKING ME ALREADY!  The problem, of course, is that I have so many great people in my life who care.  I am grateful for that, really I am, but I wish they’d care a bit less verbally!

Every time I speak to someone who I haven’t spoken with in a while (and every time I see my grandparents, who are always anxious for news and forget that we just spoke about it 3 days ago) I get asked some version of these questions.  This can translate to no questions for several days, or having this conversation 5 times in 1 day!

One of the challenges of having crappy health is keeping a healthy perspective.  I know you know what I mean.  Since I am unable to work, I don’t have a job to distract me.  Since I am not able to go out much, I don’t have other “news” to discuss.  Since I’m not able to date, I can’t distract my friends with tales of lurid sex (but maybe I should just make some up?)  This leaves me with a lot of free time to dwell on all the shittiness in my life…. or not.  I opt for not.  I try hard to keep some balance.  I read books and blogs and other useful sources to learn as much as I can about my various health conditions and the possible treatments for them.  Then I pursue those treatments.  I read books and blogs on personal finance and on various personal development topics so that if (when?) I get better, I will have a life that I truly enjoy.  I read novels and watch tv as an escape to a fantasy world.  I spend as much time as I can with family and friends, even if some of that time can only be spent by phone or email.  I spend time thinking about my situation in terms of my various options (or lack thereof) and how I might handle each scenario.  So basically, I try to avoid woe-is-me thinking as much as I can.  Sure, I have my off days – who doesn’t?  But I try to limit them and to focus on other areas of my life.

And it works.  It works really well.  Until a friend asks what my current health status is, and if I think I’ll improve, and what the doctor says, and what I’ll do without health insurance (as of this weekend!!!) and where my LTD appeal stands and and and and and…..  It drags me back into the mess that is my life, and it makes me dwell on the lousy parts and re-realize how uncertain the possible improvements really are.

So I’m done.  That’s it.  No more.  From now on, I will not answer these questions (with exceptions made for my parents and grandparents, who are all awesome and supportive and wouldn’t put up with this ban even if I tried!)  I am going to write up answers to the standard questions, make a personal FAQ, and simply email everyone who wants to know.  And if they don’t like it?  Too bad.  If they really care, they’ll understand that this is what’s best for my sanity, that their questions force me to dwell on the negative when I am trying so hard not to do that.  I will try to explain, and then I won’t answer their questions.  That’s it.  Fini.  End.

2 Comments | Decisions, Educating, Frustration, Insensitive, Intrusions, Rants, Thoughtfulness | Permalink
Posted by chronicrants

Know –> Hope

June 22, 2012

I wish people would stop trying to reassure me.

I’m in a huge amount of pain right now.  It’s probably from the storms we’re getting, but of course it’s always possible that it’s from something else.  A friend said that, based on the weather forecast, she’s sure I’ll be fine in a couple of days.  But she can’t know that and I hate when people say it.  It could be weeks or months before I get back to my “normal” amount of pain.  And yesterday I was discussing new treatment possibilities with my mother and talking about the money issue (that’ll be in a future post), and she said that she was sure I’d get back to work sometime, but she can’t know that.

They mean well.  I really do appreciate that they want me to feel better.  But saying these things is just about the worst thing they can do to “support” me.  For 20 years I’ve heard people say that they know that I’ll get better and guess what?  They were wrong every time.  It’s like saying that I know you’ll win the lottery.  Or even that I know you’ll get that job you interviewed for.  I don’t know those things.  Just like my friends and family don’t know that my health will improve.

Folks, do me a favor and just change know to hope.  I love it that you hope I’ll get better.  Just please don’t think or pretend that your desire will become fact.  Stick with that and it’ll all be good.

Leave a Comment » | Educating, Expectations, Frustration, Insensitive, Rants, Support, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

But I want to work!

June 20, 2012

I was at a support group for people with chronic pain.  This group meets in the mid-morning on a weekday so, unsurprisingly, none of us are currently working.  As we went around the room talking about recent frustrations, I kept hearing a theme: I want to work.  One woman talked about the stress of having to declare bankruptcy.  Another spoke about getting turned down for Social Security.  I was having problems with a private long term disability insurance company.  Many spoke about money troubles.  A couple mentioned not being able to take care of their kids.  Several didn’t like having to rely on their spouse for financial support, as well as help around the house.

What do these all have in common?  We want to be well!

As I listened to everyone speak, I was thinking how much I’d love to have a transcript of that meeting to show all of the doubters.  There are too many random people in society who think that we’re just trying to get “easy” money.  There are the politicians and bureaucrats who seem to think we’re all trying to scam the system.  There are the insurers who insist that we’re not really too sick to work.  And yet over and over I heard people saying that they wish they could go back to work.  Some said it indirectly and others used those words, but we were all saying the same thing.

I hated my last job.  I won’t pretend otherwise.  But I still want to go back to work.  I want an income, I want independence, and I want control over my own life.  Right now, I would love nothing more than having the choice of returning to work.  Sadly, that is out of my control, just as it’s out of the control of the others in the support group.  If only the doubters understood just how much we want it.

Leave a Comment » | Educating, Frustration, Insensitive, Limitations, Politics, Rants, Symptoms | Permalink
Posted by chronicrants

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