Yet another installment of Your Words: PANDAS Sucks Because…. In this series, we share the reasons we think PANDAS Sucks. Unfortunately for PANDAS/PANS Families, but fortunately for this series, there will forever be things for us list out as to why PANDAS Sucks so much.
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. We work together to tell the world how much PANDAS (and PANS!) Sucks, and we get to know that we’re not alone in all of this.
Thank you to everyone who sent in their reasons for why they think PANDAS Sucks! Miss sending yours in for this blog? Just click here to vent away and list out all of your reasons. The PANDAS Silver Linings series celebrates the Light we find in our Dark Days of PANDAS/PANS. And remember, you can even write a Guest Blog to share more of your thoughts or tell your PANDAS/PANS story (just click here).
PANDAS Sucks Because…it causes horrible symptoms, including crippling anxiety, and then requires anxiety inducing procedures to treat. 🙁 ~AG
PANDAS Sucks Because…It is a lonely journey. ~Gloria
PANDAS Sucks Because…From day to day I never know which child I’m going to get – my “normal” happy, caring little boy or the child ruled by thoughts of germs and dirtiness. The boy who sleeps almost naked on the floor because his bed, blankets and pajamas are all dirty. Who falls into a screaming wild rage if we let the dirtiness spread and contaminate other things. ~KD
PANDAS Sucks Because…PANDAS parents have to be managers of care, without prior training or qualifications. The hyper-vigilance required is exhausting. ~GW
PANDAS Sucks Because…the flares sneak up on us. I forget. I always forget how bad it is. How quickly he can change. ~AEZ
PANDAS Sucks Because…My fifteen year old son can’t read what he wrote in his own handwriting! ~Stacy B
PANDAS Sucks Because…It’s unpredictable, exhausting & hell. You use all your strength fighting…fighting the flares, fighting for treatment, fighting to be heard, fighting for insurance to pay, and fighting for your child. It’s exhausting. It breaks your heart when your child is in a flare since you just want to make all the bad go away & you can’t. You have to remind yourself that it will pass, your child will be in a good place again but when you are in the middle of it, it’s hell. You use all your strength just trying to get through the day knowing that the next day(s) will be the same. You have to learn to embrace the chaos, smile & carry on. ~Summer Smith
PANDAS Sucks Because…My son’s own body is attacking his own brain, and there is not a whole lot I can do to help him and as his father that really sucks!!! ~T.B
PANDAS Sucks Because…I now know what an amazing son I have but immune triggers keep stealing him from us. PANDAS sucks because I watched my son stick his head inside a cubby space so nobody could see him tic. PANDAS sucks because it steals my son’s smile and replaces it with paranoia. PANDAS sucks because it may be stealing our daughters from us too, but we can’t afford to find out right now. It sucks joy and hope and peace out of our lives without warning. It just sucks. ~PANDAS Mom
PANDAS Sucks Because…It has stolen my daughters childhood from her and causes her so much physical and emotional pain. ~PANDAS Mom
PANDAS Sucks Because…It destroys the lives of children and their families. ~SB
PANDAS Sucks Because…It changes your entire family’s life over night and you are left alone trying to piece it back together. Normal seems so elusive and we become slaves to the flares that arrive unannounced and at the worst times. Your friends don’t really “get it”and it gets tiring trying to justify and explain to everyone what it is and how it affects your child. The constant guessing about what is causing what symptom, and what adjustments in treatment to make, if any, leave me awake and night and exhausted. Most important PANDAS sucks for the child, who has to deal with grown up issues and problems, who looses their innocence and are left feeling scared and asking their parents, “will this ever go away?” And we have to stand there powerless and hopeful at the same time. ~Anonymous
PANDAS Sucks Because…You just want to have something normal in your life, but nothing is ever normal. You probably wouldn’t know what normal was anyway at this point. ~SJA
PANDAS Sucks Because…Most people don’t get it. This makes you feel very alone. You have to pick and choose who you tell. Most people think we just need to discipline. ~Anon
PANDAS Sucks Because…My child was stolen by this disease! ~Karrina
PANDAS Sucks Because…Because it has not only taken my sons childhood but my other children’s as well. It’s all consuming and at it’s worst, hopeless. ~Anonymous
Every time I post a “PANDAS Sucks Because…” installment, reading all of them makes me nod my head and say YES! It also makes me terribly sad. None of our kids or families should have it this hard. Ugh. Here’s hoping for continued momentum in PANDAS/PANS Awareness and Advocacy. It’s a slow march, but we’re all making a difference for our kids…and future kids. Someday it will NOT be this difficult. There is some good stuff happening.
After reading, are you inspired to send in your own reasons PANDAS Sucks? Click here. Want to share a more positive and inspiring PANDAS Silver Lining instead? Click here. Want to write a guest blog and tell your story or vent via a free-form commentary? Click here. There are lots of ways to participate in the PANDAS Sucks Blog. Thank you for reading and for sending in all of Your Words to share with others! It really makes a difference!
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 write a guest blog? 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” and a volunteer and technical adviser for the PANDAS/PANS documentary “My Kid Is Not Crazy.” 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.