I think that every single sick person wishes at one point or another that the way they feel could be seen on the outside, whether they have liver disease, cancer, or fybromialgia... it doesn't matter, every sickie experiences AT LEAST one roll of the eyes, sigh, or question that leaves us feeling misunderstood and a bit like a drama queen. Most of my life has consisted of these, and even now after months of collective hospital stays, close calls, and 7 surgeries, I still get the feeling like some people look at me with doubting eyes that say "You're not better yet?"
In all situations, no matter how hard I try, the need to validate myself results in a somewhat defensive explanation of what is going on in my body at that specific moment (which is usually waaaaay to much information) hehee. Even now, less then a month and a half post transplant, I find myself explaining that my new liver isn't even completely grown... my 20something pills have side-effects... my magnesium is constantly low enough to cause seizures... and most recently, that my last procedure to check for Ovarian Cancer has left me with a constant cramping (which I find ironic since I don't even have a uterus to cramp up on me) --Try explaining that one to the naysayers... ahahaa. Either way, I can't win because after explaining myself, I feel like I am just whining anyways. So instead, I find myself pushing myself a little harder then I should, not mentioning when I hurt, and even flat out lying when certain people ask me how I am feeling.
Some of this could be my own insecurities. I am definitely questioning my own healing process... it feels like it is taking way to long, but then I need to remind myself that I could be one of the many that are still in the hospital one month post transplant, or that I would still be waiting had I not had my living donor. (That one gives me chills... had it not been for Nancy, I may not have even been here to write this) So no matter how long it takes, and no matter what others say, I just need to take it one day at a time.
I was told once that when you're sick you get about 2 weeks of attention (I'm adding understanding and patience) by others after surgery/sickness, and I completely agree. Though I understand that our care takers and others close to us become frustrated and burnt out... just remember, we feel the same... only every second of the day. There is no escape for us, and add that to the frustration of being in constant pain or not knowing when the pain is going to begin or end... We are likely to be a little short fused.
The only advise that I can give to those that deal with us sickies is to remember things like "The Spoon Theory" and I know I have mentioned things not to say to a sick person... but I found this little thing on what you maybe should say. (Notice how they don't ask if we want any help... they just ask when)
--10 things to say to a sick friend
And for us sick ones... give others the benefit of doubt. Most people are trying to help, no matter how they approach it. Just because we are sick, doesn't give us the right to treat people meanly... remember that our true selves only come out under extreme pressure, everything else is what we paint for others. In other words, everyone can be a great person on vacation when times are good... but it is what we do in times of trial that show who we really are.
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