My story gets re-written everyday! 

This article just popped up in my Facebook feed and I thought the timing was funny. The Mighty posts all sorts of articles but this one fit perfect for today because twice today I’ve felt like I was doing something wrong. 

Neither person was being accusational toward me at all, but I felt like I wasn’t “performing” right. 

Okay, hold on. I have got tent ahead of myself assuming that you read the article. 

I have good days and I have bad days, some days I barely get out of bed and other days I can seem as if I am “normal” and healthy. But if I cancelled plans with you yesterday (bad day) and you see me out today (good day) it makes me wonder if you are questioning my honesty, is she really sick? 

Saturday night I moved around almost normal, I laughed and I talked, I stood and I walked.  But there are a couple things you don’t know.

  • I rested well in advance.
  • I took extra medication to be okay.
  • Sunday morning my body was swollen with pain. 
  • I am still paying for that night with painful feet and joints. 

So while I seemed normal to you, I was/am far from it! And see, even here I am defending myself. 

With chronic illnesses we have days/weeks/months/years that we are effected differently. 

Don’t judge my right now based on my yesterday. Don’t compare my today with my tomorrow! It will only confuse you, cause you to doubt me. Time is misleading when it comes to my symptoms. 

Anyway, I wanted to share this article, so I logged in and had a kind message that made me giggle, someone was paying me a compliment and instead of leaving it at that I was concerned about if they believe that I am really sick. Perfect timing to read and share this article! 💕💕💕 *I know the message was not illintentioned. 

We just spend so much time trying to tell people that what we have is real, it actually makes us feel “guilty” if we are caught doing a “not sick” activity. We are well aware of the doubt and lack of understanding from friends and family, doctors and employers! We know how hard it is to believe one day is bed ridden and the next is time on a stationary bike- believe me, we know, we live with it everyday. Not knowing from one minute to the next what our abilities will be. 

Don’t judge a book by its cover, you never know the twists and journey of the story inside. 


4 thoughts on “My story gets re-written everyday! 

  1. I know just what you mean. I might have 1 good day where I can go out out of 14. Here’s what I’m dealing with, a lot of it is “invisible” :
    Adrenal Insufficiency
    Degenerative arthritis of the spine
    Trigeminal Neuralgia
    Glossopharyngeal Neuralgia
    Piriformis Syndrome
    Migraine headaches
    Chronic gastritis
    Raynaud’s Syndrome
    Sjogren’s Syndrome
    Chronic Pain

    Other than that…I’m doing fine ! 😅

    Liked by 1 person

      1. Out of curiosity, did you have mononucleosis when you were young ? We always thought something about my immune system changed after I went through 3 months of severe mono at 16. They are just now starting to look at the connection between people who had mono and people who developed immune system diseases like MS and Lupus.


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