“Making the invisible➡️visible: My least favorite type of blog, so, I added some funny memes in w/the serious. 😬”
Hard to share, b/c it’s stuff I tried to hide for so long, but it’s important for education, advocacy, & support.
A common misconception is patients who are chronically ill w/invisible illnesses are “faking, exaggerating, lazy, want attention.” This COULDN’T be more wrong.
My little zebra has been sick for a week. Missed 5 days of school (1st time EVER), 2 doc’s appts. We now have matching “mother-daughter inhalers.” Her fever is gone so she has to go back. I can see how rundown she is & breaks my ❤️ to send her back when she tells me, “but mom, I still feel awful.” Basically, I had to do a mild, “suck it up speech.” (NOT what I said) I told her to try, & go to the nurse & call me if she still feels bad & we’d go back to the doc. I didn’t have the ❤️ to tell her that this is “🦓-life.” We take longer to heal & when our 100% is NOT 100%, adding illness to that makes it even harder to bounce back. She’s already told me, even when she’s not sick, that’s she’s always tired. 😢 Thankfully, she was diagnosed w/Ehlers-Danlos early at 4.5.
I just told her to do her best & we will take each day at a time, eat super, extra healthy & get good sleep.
As adults, those with chronic illness will deal w/this forever. It cuts deep to hear, “must be nice not to have to work/school” 1) many of us do, just not FT anymore, 2) many of us LOVE work; we miss that in our lives! 3) we spend time doing unpleasantries to maintain our lives/health (& getting BILLED for it) or “I wish I could lay around all day!” Again, we are NOT, & if we are able to, that’s like saying to someone who has the flu: “You’ve got the flu? You’re so lucky! I wish I could skip work/school & sleep!” No. NOT what’s happening, not a choice, not “fun,” we aren’t happy about this. We WANT a “normal” life, but we can’t. We make the best of it. We like to smile, laugh, do stuff! We grieve being judged/labeled, & adding more to our “can’t” list.
Please feel free to share your experiences. This is a safe place.
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