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Saturday, May 15, 2010

The Real Truth About Me

EmotionalImage by KaitlynKalon via Flickr

Yesterday got me in touch with some truths about myself that I hadn't experienced in a while.

Day-to-day, I try to convey information in an optimistic tone on my blog, sharing my discoveries, coping strategies and words of encouragement. Yesterday I wondered if sometimes I avoid talking about how much of a struggle life with chronic illness really is and how chronic illness evokes a wide range of emotions in me. You see, I have started reading some new blogs and following some new people on Twitter who don't hold back and tell it like it is for them, so I began to wonder if I need to be more real and talk about ALL my feelings too.

So I want to set the record straight.

For me, living with chronic illness seems to be about adjusting to lots of grief and loss. As a result, I feel a lot of different things about living with chronic illness. Elisabeth Kubler Ross' five stages of grief pretty accurately describe the experience: denial, anger, bargaining, sadness and acceptance. As life would have it, just when I think I have finished adjusting, something new pops up and I go through the whole cycle, again and again. So that would be denial, anger, bargaining, sadness, acceptance, repeat, denial, anger, bargaining, sadness, acceptance, repeat...

My feelings of grief and loss can be triggered by many things:
  • disillusionment when a new treatment option doesn't bring the relief promised
  • unfair comparisons to healthy people that leave me feeling less than
  • dissatisfaction about where I am in my life versus where I want to be and where I dreamed I would be
  • reminders that I am not living up to other people's expectations of me
  • overt and covert accusations that I can't have THAT much pain, fatigue and impairment
  • frustration about not getting the help I need from family and friends to do every day, ordinary things
  • annoyance at my limits and limitations
  • disappointment when those around me experience temporary lapses in caring and act as if they have forgotten that I struggle with chronic illness 24 hours a day, 7 days a week, 365 days a year
Most of all, I am keenly aware that I am not a normal, healthy person. I admit that I don't travel well, I can't keep up, I say no a lot, I cancel plans, I make a lot of requests, I require many accommodations and I am, in general, very high maintenance. In short, I make a lousy friend! I realize that the way I am is not at all ideal, which is why I overcompensate by trying to be easy going, like keeping my mouth shut and putting up with a lot of guff from people rather than getting into it with them.

But then yesterday I started to question if this is really the best approach FOR ME. 'Maybe I just need to stop being so inhibited and start being more myself,' I thought. I pondered whether assuming the role of Ms. Fibro-friendly really sends the right message. Does presenting an image of myself as coping "so well" send a mixed message?

"She says she has a lot of pain and fatigue but then she seems to be doing, saying, going out, living and smiling."

It seems living my best life with chronic illness may be fraught with some contradictions.

To Be Continued.....



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2 comments

Kat @ For the Love of Chaos said...

I know exactly what you mean. I've dealt with fibromyalgia for 18 years - since I was just 9 years old. Prior to that, I had a bone tumor which required 5" of my tibia to be shaven out. I've been in significant pain most of my life... I push through it most of the time, but it is so frustrating for me when I do slow down how people just don't understand. I do do much regularly (despite ALWAYS being in pain, feeling "cloudy" headed, being drained, etc) that it is as if when I can't do things, I feel like people believe I'm just making excuses. They either don't believe I'm always in so much pain or they "forget" since I don't really mention it or let it inhibit me until it's really bad. For me, since I've always dealt with it... it's not really debilitating until it's EXCRUCIATING - a level of pain that most people would go to the E.R. for; because anything less than that is just "normal" for me. I've never known anything different. *hugs* There's really nothing we can do about how people respond to us, but I DON'T think at least being vocal and not silencing yourself to keep everyone else comfortable is doing YOU any favors.

rlee8235 said...

Amen Selena! I think because we're conditioned to believe showing our imperfections makes us weak we don't. That only hurts us! So......it's good to get angry and this crapola we deal with. It sucks and it's hurt my life. I also go through the 5 stages of grief over and over.............
Go Bruins is right.....Dykstra Hall graduated in 74!