Vent about peoples lack of understanding......

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Regular Member

Date Joined Jun 2016
Total Posts : 57
   Posted 1/12/2017 6:56 AM (GMT -6)   
This isn't about lupus but I'm many of you can relate. My daughter,12, was planning on staying at her friends house tomorrow tonight for a sleepover and she mentioned yesterday that her friend had a nasty cold at school and she didn't think she should go. My daughter has kidney disease. She is and has been on immuno suppressants since she was two. I agreed with my daughter that we should probably hold off on the sleepover . I called the other mom and said as much. Her response was " its just a cold whats the big deal" I calmly explained that a cold can be a very big deal to someone like my kid and how and why. The other mom seemed really annoyed . I offered to have the sleepover at our house as soon as her kid was better. I just don't get why its so hard for people to understand. what a cold means to a healthy person is generally a minor thing but to someone with a chronic illness it can be a severe set back.

Regular Member

Date Joined Oct 2016
Total Posts : 25
   Posted 1/12/2017 7:18 AM (GMT -6)   
Frustrating! I'm going through something similar. Recently Dx'ed with Lupus, and my friend knows this. She asked me why I was cranky the other day. I had thought I had done a good job of putting on a happy face, but I guess not. So, I told her how ill I've been feeling, and how the new medicine is making me feel worse (temporarily). Her response essentially was "sorry you're going through that, perhaps we shouldn't hang out until after you feel better."

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 1/12/2017 8:12 PM (GMT -6)   
I've been staying at my sister's house a lot last year and this year tending to her due to illness. Her husband has put in CF and florescent lights everywhere in the house. Now they both know they make me sicker, but they haven't made any attempt to change them over to LED.

My sister needs me here right now, but I'm in such pain right now.
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 1/13/2017 3:04 AM (GMT -6)   
Once in a while when I tell someone about my Lupus they reply, "Good luck with that."

If I had the energy I would slap 'me upside the head.

Love, Butterflake devil
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Regular Member

Date Joined Jun 2015
Total Posts : 144
   Posted 1/17/2017 3:04 PM (GMT -6)   
I just had a friend come down with the flu. Her husband is out of town for work and she has twin 9 year olds. She asked me to take her son for the 3 day weekend so she can rest. She got annoyed when I said no. Besides my condition, my husband is fighting a gi/fibro thing.
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal
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