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Today I had another person subtly suggest that I get a job since I'm not in school right now. From the conversation that followed they were clearly of the opinion that a) I am a burden on my family b ) I do not try hard enough and c) it's all in my head. Even though I explained several times over that I no longer have any PANDAS symptoms because I am on prophylactic antibiotics and that I am currently attempting to deal with the few physical symptoms I have left (nausea, exhaustion, etc).

 

And of course I know that all is NOT TRUE. Also, if I was well enough to get a job I would just go to freaking college. Duh.

 

Anyway, I know lots of your kids are too young to deal with that particular kind of comment, but I know ya'll will understand and I really wanted to share it with someone.

Edited by emmalily
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Ah, emmalily... that just sucks! Do not listen to garbage like that, because you know better. Everybody on this forum will back you up!!!

 

We had some (normally sympathetic) family members make similar comments about our PANDAS son. Things like he "just does it for attention," "lacks discipline," "military school will cure what ails him." Didn't hear this face to face but "through the grapevine" from others in the family. It shocked us. That's one of the cruelest things about PANDAS: the traumatic injury is deep inside the skull, where people can't see the damage, so they just don't get it. The PANDAS sufferer gets judgmental attitudes and condemnation instead of compassion.

 

Ignorance deserves to be ignored... so ignore the boneheads who lay this kind of junk on you. It's wrong, it's callous, and it's unfair. Hang in there - you're going to get to college and do awesome!

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Ah, emmalily... that just sucks! Do not listen to garbage like that, because you know better. Everybody on this forum will back you up!!!

 

We had some (normally sympathetic) family members make similar comments about our PANDAS son. Things like he "just does it for attention," "lacks discipline," "military school will cure what ails him." Didn't hear this face to face but "through the grapevine" from others in the family. It shocked us. That's one of the cruelest things about PANDAS: the traumatic injury is deep inside the skull, where people can't see the damage, so they just don't get it. The PANDAS sufferer gets judgmental attitudes and condemnation instead of compassion.

 

Ignorance deserves to be ignored... so ignore the boneheads who lay this kind of junk on you. It's wrong, it's callous, and it's unfair. Hang in there - you're going to get to college and do awesome!

 

The absolutely absurd notion of military school fixing PANDAS just made me laugh so hard. Thank you :D

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You totally have my sympathy, emmalily! I am fortunate to have a couple of good friends from a local support group & we have had many a gripefest about other moms in our homeschooling group who have no health issues & are constantly pressing us to "be more involved" (do more!).

 

They are nice women who have NO CLUE what it's like to deal with adrenal fatigue or to feel sick all the time or any of this kind of stuff we're all constantly dealing with. For the most part, it doesn't matter if we try to tell them what it's like because they have never experienced anything like it & cannot relate. I have little doubt that to them we just look like a bunch of whiny, self-pitying, do-nothings.

 

It is frustrating & it hurts, but finding supportive, empathetic people to comiserate with helps a lot! Come here & kvetch to your heart's content! Here's a cyber(((hug)))!

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