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One of the hardest things for me to manage since my sarcoidosis diagnosis is expectations. I want so badly to be who I used to be…that ball of hard charging intelligent energy, quick with a witty comeback and ready for every challenge. Those were the days and that person is my yardstick. I compare my post diagnosis self to that woman far too often and I end up in dangerous territory. I end up in “Expectation Land”, where I once knew the language fluently and needed no map for a guide.

Since my sarcoidosis diagnosis, “Expectation Land” has become a scary unpredictable place of self loathing, guilt and personal inditement. I simply cannot do or be the person I once was. My wit, while still intact, is slower. My brain is sometimes a foggy mess of mixed up ideas and my body is wrecked by the unwelcome and unexplainable symptoms of this rare disease.

Whenever I enter “Expectation Land”, I can feel that I have taken an unsafe turn in my day. My anxiety level rises and I know that I am about to punish myself with shame for something I can’t do or didn’t get done on my never ending “to do” list. “Expectation Land” is full of distressing detours – doubt, fear, confusion, hesitation, failure, distrust and apprehension. I know that staying in this place is bad for me. It saddens me because no matter the effort I put forth, I will never live up to who I used to be.

When I stay in “Expectation Land” too long, I forget that who I am now is who I am meant to be. I become blinded to the beauty of this new person, flawed and ill and vulnerable. “Expectation Land” takes me away from who I am supposed to be right now. I am flawed and I am sick and I am vulnerable but these things make me a kinder person and in my vulnerability, I recognize far more clearly the depth of what matters most in this world and what does not.

“Expectation Land” is a cruel place. It is a reminder of what was, without concern for what is now, or what will be. Nothing good comes from visiting a place I no longer belong. I am much better suited to living in place of acceptance because I know through acceptance that I am still a worthwhile person, that this disease may have diminished parts of me but it has also illuminated others and it is this very light that will help me find my way out of the dark world of unrealistic expectations and back in the land of the living and the land of light…illness and all.

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