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. To date, we’ve shouted out 337 reasons why PANDAS Sucks, and after this blog, we’ll have shared 343 reasons. WOW!!! That’s a lot of suckiness!!!
The submissions in this installment are mostly taken from the PANDAS/PANS Community Survey that folks completed back in October. I had an option for you to complete the sentence “PANDAS Sucks Because…,” and many of you did. Thank you so much for your participation. When you share your story, it helps others not feel so alone. They can say “me too” instead of thinking it’s only them. You can always share your thoughts here, and look for more ways to share coming to the PANDAS Sucks blog in 2017. For now…here’s your latest reasons PANDAS Sucks:
PANDAS Sucks Because…You live in fear every moment of everyday that your child will be lost to himself and you. ~KT
PANDAS Sucks Because…It is a never ending battle and you can never get too comfortable when you feel like your child is well all it takes is one interaction with a sick child to set us back for months. ~PANDAS Parent
PANDAS Sucks Because…Our kids’ childhood is filled with supplements and treatments, blood work and doctors tests instead of popsicles, parties, and play dates. Our kids are robbed of a carefree childhood and their poor brains are on fire, taken over by this disease! ~Anonymous
PANDAS Sucks Because…I never know who my daughter is going to be when she wakes up. And I miss my happy, go lucky daughter. I just want her back. ~RW
PANDAS Sucks Because…It has stolen at least three years of my son’s life, while also causing him traumatic suffering and put the whole family through hell. Our whole family has PTSD and while I know we will get through it somehow – it will not be in one piece and we will not be stronger because of it. My son’s future – once bright and full of promise is precarious. Once an incredibly bright, gifted child with extremely developed social skills, he is now a hermit with likely permanent brain damage. I am not sure he will ever be able to survive on his own or that we will ever be able to travel or even leave the house as a family for fun again. My daughter lost her older brother and is unable to have anyone at the house – which has led to lost friends ships for her too. PANDAS really does suck. ~PANDAS Parent
PANDAS Sucks Because…It has stolen my child’s life, her friendships and fun she should have as a kid. It has done the same for our non-PANDAS child who has to live with its effects on the household. ~Amber
PANDAS Sucks Because…It has caused my son to lose control of himself and his life. ~Anonymous
PANDAS Sucks Because…it stole my son’s childhood. ~Anonymous
PANDAS Sucks Because…I’ve wasted over two years with incorrect treatment. ~PANDAS Parent
PANDAS Sucks Because…Not everyone is aware of it. It’s an invisible illness. Not all doctors acknowledge the fact that PANDAS is real. It’s frustrating to have to explain the condition to people. ~PANDAS Parent
PANDAS Sucks Because…It has robbed my child of her childhood. ~Anonymous
PANDAS Sucks Because…Progress is so slow. ~MB
PANDAS Sucks Because…very few people understand it. It is a sort of “invisible” disability. ~LAZ
PANDAS Sucks Because…it robs your child of a simpler childhood and makes it harder for them to reach their full potential whether that be just for a short time or an extended period of time. ~GMT
PANDAS Sucks Because…It steals your child and every day you never know which way it’s going to go. Hell it can change in minutes. ~PANDAS Parent
PANDAS Sucks Because…when your PANDAS child is in a flare or exacerbation, you use every ounce of strength you have to get through your day. Then you wake up the next day and do it all again the next andday and the next…. ~Sarah
Thanks to everybody that submitted their reasons that PANDAS Sucks. There are at least a million more things to say about why PANDAS Sucks so much. Wanna add to the list, just click here and start typing.
FYI: I am going to be working to redesign the PANDAS Sucks blog in the next days/weeks. You will still be able to access the Blog, but the next post I make will be to announce the new design and any updates. The blog will be more mobile friendly and organized a bit differently with a few new features. I’m excited to share it with y’all soon. Thanks for reading and participating!
Tell us why YOU think PANDAS Sucks. Click here.
We post these reasons in a blog series.
Have YOU found a PANDAS Silver Lining? Click here.
Want to send a message to Sarah? Click here.
Sarah Jane Alleman 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, likes a good red wine, 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. She is also the Director of Kentucky PANDAS/PANS Support, which strives for more awareness, support, and understanding of PANDAS/PANS. Sarah was a Parent Contributor to the book “PANDAS and PANS in School Settings.” Find PANDAS Sucks on Facebook, Instagram, 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.