Image 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
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.....