PANDAS Sucks exists to tell our collective story about PANDAS/PANS. How it affects our children. How it affects our families. How it affects us personally and changes us. How it affects everything. How we ALL can heal and recover. Let’s tell the world together why PANDAS Sucks.
On the web site, we asked YOU to complete this sentence, “ PANDAS Sucks because….“,and YOU* did. (Thank you!) Here are a some reasons YOU said PANDAS Sucks!!! There are still at least one million more reasons to go. Please keep sending in your reasons. Let your voice be heard…the world needs to know.
PANDAS SUCKS because…the self-doubt is excruciating. (W.N.)
PANDAS SUCKS because…Everyone questions and even disregards your insights as a parent, to the point that you can begin to question yourself. Meanwhile, your whole family is suffering. That sucks. (R.S.)
PANDAS SUCKS because…every time I think I have my child back, Pandas eventually takes him away again. UGH. (C.W.)
PANDAS SUCKS because…It causes the whole family to ride the roller coaster ride. Schools/teachers do not understand even if you drown them in literature and explain until your heart falls out. You try to do everything you can to help your child and you find road blocks either by health insurance or no local doctors. You can’t seem to explain why your child spirals whenever someone around them has strep, a virus, flu. Your child loses his/her fine motor skills and the teacher calls you to say “what’s wrong with your kid” and says he is not putting any effort in. (K.S.)
PANDAS SUCKS because…of the way it makes you feel when your son asks you out of the blue; “Am I a burden?”. PANDAS Sucks because as sad and stunned as it makes you feel, you know how much he REALLY, REALLY, REALLY is hurting and questioning his self worth in order for him to ask that question. PANDAS sucks because even though you are blessed with a really good job, you are in deep debt and live paycheck to paycheck, which stresses you and your wife out, but at the same time you don’t really care because your kid’s PANDAS (that sucks you know what!) MUST be dealt with at all cost. PANDAS sucks because you essentially suffer a nervous breakdown because of how you continually suffer the dilemma of NEEDING (because I’m his Dad) to personally participate in a critical PANDAS issue or appointment at the exact same time that really good job DEMANDS your attention and physical presence too. Puck FANDAS!!!! (J.G.)
PANDAS SUCKS because…even when times are good, you’re always waiting for everything to fall apart. A cough or a sniffle could be a catastrophe. So you’re not really enjoying the good times, and when you realize that, you feel guilty. And if by chance you ARE enjoying the good times or experience a bit of normalcy, you end up feeling bad when you remember how PANDAS can come back at anytime. (S)
Feel free to submit your reasons PANDAS Sucks anytime (click here to tell me now). I will also be asking for personal PANDAS stories in the new year. If you want to tell your story (anonymously or as a guest blogger), please send me a short message, and I’ll be in contact with the details. Thank you!
*Initials/Alias at end of quote indicate the comment’s author. Names will not be used.
Read the first installment in this series: “Your Words: PANDAS Sucks Because…(#1)“
Read the second installment in this series: “Your Words: PANDAS Sucks Because…(#2)“
Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.
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