The Pedestal Effect

October 17, 2011

I’m so excited to be a guest writer today at ChronicBabe!  Please check out my post on the pedestal effect, and then check out some of the other great stuff ChronicBabe has to offer.

 

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Losing family to my illnesses

October 11, 2011

Some people with chronic illnesses talk about losing friends due to the illness.  I can see how that might happen.

For me it was different, since my illnesses started at such a young age.  I was a child when the symptoms first started, and by the year following college they were affecting me in much bigger ways.  I didn’t lose any friends because I had the illnesses before I met them.  On the other hand, I’m certain that I’ve missed out on starting friendships and romantic relationships because of the illnesses.  I put up walls to avoid getting hurt, and ironically that probably ends up hurting me more.  Yes, have been people in my life who didn’t want to be around someone with health problems, but my guess is that I mostly pushed people way.

There’s one exception: a sibling.  She knew me before the health problems started.  Somehow, though, she’s less sympathetic than my friends.  She’s the only one who has ever questioned my truthfulness about symptoms.  She was once with me during a flare and was horrified by it.  For a while after that she was very understanding.  Then when she didn’t see any severe symptoms for a while (because I always try to hide them, even from family) she began to doubt me again.  I know that there has been some jealousy, but aside from that, I don’t understand why she isn’t supportive.  That isn’t to say that she hasn’t been supportive in the past; there have been times over the years when she has helped me out.  This time, she’s noticeably absent.

It’s been hard, but I finally decided to take a medical leave of absence from my job.  I told my parents in person, but emailed the rest of my family and some friends.  I couldn’t handle having the conversation over and over.  In the email, I asked people to respond by email instead of calling, since I needed some time to get a handle on things.  I got the most amazing, supportive emails.  Some made me laugh, one made me cry, all made me feel loved.  I have the best family and friends.  Sadly, almost as loud as the support was the silence from several people.  I don’t know if they are clueless or don’t care or something else.  I know they read the email.  And among them is this sibling.  She never responded.  How could she not respond?

Now, we’re not close.  Actually, we don’t get along all that well.  But whenever either of us has needed something, the other has been there for her.  I’m not asking her to do anything for me.  I’m not expecting any actions.  But I’m shocked that she didn’t even respond to my email.  How could someone be so callous towards their own family member?

There have been a few times over the years where we didn’t talk to each other.  We always knew we’d work out our problems eventually.  I always assumed that sooner or later we’d figure out a way to get along.  But this is unforgivable.  Maybe if this was the first incident I’d let it go, but I just can’t do it again.  She’s appeared to have resentment of my health issues for years and I’m just not going to put up with it anymore.  Life is too short, and I need to focus on my own problems, not on her problems with me.  I’m so thankful for the many supportive family members who have been unbelievable this week.  I’m so thankful for the many friends who are saying and doing all the right things.  If only my sister could do that.

 

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Reality in the eyes of a cynical optimist

October 6, 2011

I read an interesting blog post this morning, If it walks like a duck…., all about the power of words used to describe a chronic illness.

I admit that at times I have encouraged people to look for the silver lining on clouds, and I try not to do that anymore if it’s not the appropriate situation.  Personally, I get very frustrated when people do that with my health.  They suggest that things will improve soon, even though they won’t.  People tell me that if I change my attitude, I’ll get better.  (Been there, done that, no dice.)  I understand wanting to remain positive, but I think it’s also important to be realistic.  I am not suggesting that we all dwell on the negatives, but ignoring the negatives doesn’t make them go away, either.  I’m all about accepting the reality of our situations.  Now, clearly I don’t always do this (see the many blog posts on taking a medical leave of absence from work, something I should have done far earlier; I’m too good at denail) but the point is that I attempt to do this.  I might fail, but I do try to keep a realistic view of things.

Despite certain appearances, I’m actually a very optimistic person in general.  I’m also very cynical.  I consider myself a cynical optimist – it seems like a contradiction, but it actually works out very well; I anticipate problems, then look on the bright side of everything.  But the thing is, that doesn’t mean that I pretend everything is perfect.  We all have problems, and I think it’s important to recognize them and accept them.  I could pretend I’ll get better next week, but then how would I feel when that didn’t happen?  It’s ok to hope for something better, as long as it’s realistic.  Living in a fantasy sounds nice, but it just doesn’t work.  If we don’t accept things, how can we move on to have lives outside of of these problems?  Personally, I’d rather move on.

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Temper control

October 3, 2011

I started this blog because sometimes I get angry.  I get angry at the illnesses, I get angry at the symptoms, I get angry at other people who are insensitive.  These people are coworkers, family members, friends, acquaintances, policy-makers, and strangers.  Some days nothing bothers me.  Some days I’m peeved.  Other days I’m mad.  Some days I’m angry.

Today moves past all of those emotions, right to enfuriating.  I am so angry, I want to yell, kick, scream.

This post isn’t about the details (even as an anonymous post, I’m guessing it might cost me my job, even though they’re completely wrong here.)  No, this post isn’t about what exactly happened.  It’s about the emotions

I’ve always had a temper.  Over the years I’ve learned to control it.  Most people are shocked when I say I have a temper because they never see it.  They should have heard me ranting this evening.  The trick, of course, is to control my temper when I confront the job-type folks who are causing me to feel this way.  I need to control the rage.  I will have to think rationally and present my case calmly and clearly.  I know that getting upset will diminish my position.  Still, WHAT ARE THEY THINKING?

Ok, time to take some deep breaths.  Tomorrow will be an interesting day…..

 

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