GUEST POST #2: still sick

Hi my name is Claire, or @chronically_claireann on insta. The beginning of this rant was written by Coffee Spoonie @coffeesponnie on Twitter. And the rest I wrote. She inspired me to get something’s off my chest about how it’s difficult when people see me happy and then think I’m cured and don’t believe me when I am not doing well, unhappy, and still sick. 

As a person with many chronic illness I am constantly worried about people using my good days against me. MY GOOD DAYS are NOT my standard. They are the EXCEPTION. They don’t give you permission to raise the bar on what you expect from me and to then act disappointed because I don’t meet that standard of “HEALTH” you’ve set the next day and the day after (@coffeespoonie). Just because I was able to do it yesterday but cannot today DOES NOT MEAN that I am choosing not to, do not want to, or am being lazy. Just because I was feeling better for 4 days DOES NOT MEAN I am cured. Just because my blood values have gotten better DOES NOT MEAN I’m cured. It means that things have slightly improved for the time being. CHRONIC ILLNESS means CHRONIC I will live everyday of the rest of my life with these illnesses and I will die still having these illnesses. Please leave your “alternative medicine” and “pseudoscience” cures and health tips at the door when you see me. Just because you cannot see why I need a handicap pass DOES NOT MEAN that I do not need it and am faking a disability so that I can park in handicap. Yes I do need several days of exclusively staying in bed after spending a whole day using up a lot of energy. I am NOT being lazy because I need to recover for the next several days. Finally just because I’m happy, smiling, and laughing DOES NOT MEAN I feel well and am “healthy” or “cured”. 

I wrote this because the holidays are coming up and I’m going to be seeing my relatives who often see my good mood as a sign that I’m no longer sick. Or, that since I’m wearing makeup and I’m dressed up and smiling I must be cured. It sounds terrible but sometimes when I’m with people who I know feel that way or think that way, I will act more sick or walk a bit more clumsy just so they won’t think I’m better and they will keep treating me the way I need to be treated. It’s just really complicated. I wish I could send people this rant when they treat me like I’m cured but I don’t want to hurt them because I know they just don’t understand. I hope other people can relate to this too.

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