Coming out of the chronic illness closet


Them: “Hey you want to go on  (fill in the blank here) trip with us?

Me: “Uh, I don’t think I can.”

Them: ” Oh come on, you know you want to.”

Me thinking: Sure I want to but there is no way I can do that physically it would just be way to much. What to I say? Do I say I can’t because it will be too exhausting? Then they will probably tell me  I should just go to bed early and the problem will be solved. How do I convince them to let it go but still include me next time?

This is a not infrequent scenario on my life. When I meet new people I never know when to come out of the chronic illness closet. At the beginning of the relationship it feels awkward to just announce it, but as a relationship heads toward friendship I can never find the right moment. Discussing illness is difficult and as a private person I am always trying to find the right balance. This is not made easier by the fact that on the outside I look completely normal. I am often in unbearable pain but I am great at putting on my game face and hiding it. Someone who doesn’t spend a lot of time with me might think I live a normal life. Even someone who spends a lot of time with me but always in a place where I have my game face on would not be able to see my disability.

As my relationships develop at some point people start to notice that I tend to flake out a lot and that I’m hesitant to make commitments. I can look unreliable which is actually the complete opposite of my personality. I hate looking like a flake so I do want to explain what is going on. At the same time I know that few people can really comprehend why I flake out so much which makes me wonder if there is any point in making myself vulnerable. Despite that feeling, there are a few lessons I’ve learned through hard experience along the way:

  1. There is no magic point in a relationship to reveal your disease
  2. Give your friends a chance. They deserve a chance to help you and to try to understand.
  3.  Be willing to be vulnerable. “We cultivate love when we allow our most vulnerable and powerful selves to be deeply seen and known.” Brene Brown

Will you regret it? Possibly, I have on occasion, but on other occasions my friendships have become deeper and more meaningful because I was willing to show my true self.

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