This is the 21st installment of the Your Words series: PANDAS Sucks Because…. WOW! We’ve shared all of our reasons PANDAS Sucks 21 times since October 9, 2013. We could share reasons 1,000 times and still not cover them all. Ugh.
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 for participating in this series and the other PANDAS Sucks series. You can always vent about why PANDAS Sucks here. Or share when good things happen with the PANDAS Silver Linings series. And you can even write a Guest Blog to tell your story or share other personal thoughts (click here).
Here are 20 more reasons y’all think PANDAS Sucks. I agree with all of them. Well, I wrote one of them…but you know what I mean though. PANDAS Sucks!!!
PANDAS Sucks Because…2 1/2 years ago it stole my child and I can’t ever know what he could have been or what age 3.5-6 might have been without constant fear, pain, useless demoralizing medical specialists and unrelenting symptoms. We have lost his childhood. ~Terra
PANDAS Sucks Because…You catch glimpses of your old child when they’re having a good moment. Yes, I said moment because we all know that just like a light switch, a good moment can quickly escalate into hell. And it breaks your heart over and over because you know your sweet child is still in there, but it feels near impossible to reach them. You just want to reach out and hug them when that moment comes, and never ever let them go…but it doesn’t work like that. So you embrace that good moment, maybe shed some tears, and long for the day when you get your baby back! Screw you PANDAS! ~Diane
PANDAS Sucks Because…So many people, including doctors, friends and family don’t fully understand the illness and some deny it exists. ~Leslie
PANDAS Sucks Because…My DS 15 is controlling my life because he can’t control his. Can’t turn on lights, run water, get leash to walk dog, walk in my living room or kitchen because he is standing in hallway blocking entrance. So many rules to follow. ~Julie
PANDAS Sucks Because…Because it takes over your child. When your child lays there and begs you to help him and make this all go away, it rips your heart out!! Shame on doctors who don’t believe this exists. I invite any doctor who doesn’t believe in PANDAS to come to my houses. Give it 1 or 2 days, and they would believe. ~Dawn
PANDAS Sucks Because…You suddenly find your now not only a parent with a sick child, but you have to fight for help. You have to educate yourself to save your child, whilst you’re in the most stressful, tiring, worrying, & heartbreaking situation. But still have to keep a smile on your face for your children’s sake. And while your barely hanging on at that, you have to deal with insensitive comments from others who simply don’t understand your child. ~Laura
PANDAS Sucks Because…You go to sleep so exhausted but scared of what tomorrow is going to bring. It’s simply debilitating for your child and the whole family. ~Edo
PANDAS Sucks Because…It took away most of my daughter. I miss her. I miss laughing with her. I miss just enjoying doing simple things with her & all our family together without fear of explosion. I miss being able to hug her without OCD attacking her. I miss her affection. I miss her giggling. I miss our peace of mind. And I miss the feeling I could help her through anything. I really miss my daughter. ~Laura
PANDAS Sucks Because…After 4 years of not being in a real school, you change your life/job and you get your child in school…but you can’t quite tell them your kid has PANDAS and what happens. Mother and brother get pneumonia…and your PANDAS kid misses 11 days of school. Then comes back to be so far behind that he starts back up with the anxiety. You get him in counseling (therapist works well), psychiatrist wont give meds….and after hitting 20 days…school says good bye to your kid—but you still have to pay the private school tuition. And worst of it all…you teach there and can’t win the appeal even though he went from Nov 6-Dec 16th every single day healthy or sick….and only failing 1 class of 8. UGH…PANDAS SUCKS!!!! ~K Sa-Sm
PANDAS Sucks Because… It robbed me of my sweet, lovable, respectful child and most importantly it robbed my child of his happiness. ~Jessica
PANDAS Sucks Because…It is so unpredictable and crazy…. it changes a good day into a bad one in the flip of a switch! It is unfair to my smart, outgoing, easy going 8 year old who changes into a 2 1/2 year old baby…an unhappy, OCD, controlling, and defiant kiddo…just like that! It is just not fair and breaks my heart!!! ~Tamra
PANDAS Sucks Because…It marginalizes our children as being odd, weird, or mentally ill. It separates them from their peers and themselves. IT is not seen as an illness but as a character or behavioral problem attributed to bad parenting. It magnifies the medical community’s inability to be curious or to listen to a parent who says their kid is sick, help me please find the cause. It isolates, steals lives, and doesn’t have to be this way if the medical community would only look, listen and act to help treat this terrible condition. ~AH
PANDAS Sucks Because…Everyday use all your strength and all your resources to fight this disorder and seem to lose ground. Your child can see the best doctors, take the medicines prescribed, go to therapy, do all the right things, and look at you and say “why am I not getting better… why is it not working?” As a parent, it is the most helpless feeling in the world. I hate it almost every day, and I find new courage in him almost every day. ~MJG
PANDAS Sucks Because…I can’t always trust my body to do what I’m telling it to do.~EF (a PANDAS patient)
PANDAS Sucks Because…Just when you think your child is improving, no matter how small the improvement, something happens, and you go back to that dark place. Just when you think you’ve found the help you need, insurance is no longer accepted. Just when you think you found the right doctor who may have some answers…things get worse and no one knows what to do. Just when you can dream of life being normal again….it shatters the moment you wake up. Decisions that should be made by doctors are put on the parent,s and if the decision we make doesn’t work we feel even more guilt. PANDAS sucks because it’s Christmas and DAMN IT can we just have one holiday…just one not ruined this year!?!?! ~Jolie
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 day and the next…. ~RW
PANDAS Sucks Because…None of the health professionals I attend with my beautiful now 21 year old daughter knows about it and I am constantly trying to educate them about it! PANDAS takes the whole family hostage and is all consuming! ~Liz Wood
PANDAS Sucks Because…I am constantly wondering if I am doing everything I can to get my son back. I don’t remember what life was like before PANDAS. I can’t leave him alone. I have lost friends, there is discord in our family, and I am always waiting for the next crisis to hit. Antibiotics, IVIG, steroids, supplements, therapies, school meetings, weekly advocacy, and tears. Lots of tears. ~KJM
PANDAS Sucks Because…There are so few doctors that will treat these children that you have to wait for months to get an appointment while you watch your child fall apart before your eyes. ~JP
PANDAS Sucks Because…Your PANDAS PTSD has wrung all of the joy out of your life. You honestly cannot remember the last time you were truly happy. It’s true that happy things DO still happy…yes. You know that. You see that. You even encourage others to look for good things (PANDAS Silver Linings). But many times it takes a conscious effort to tell yourself to smile or to feel good or to not crumple up in a heap because OMG THIS IS ALL TOO MUCH FOR YOUR FAMILY AND TOO MUCH FOR EVERYBODY GOING THROUGH PANDAS/PANS! And currently your child is in a good place, and you want to enjoy it…and you want him to enjoy it too. But your psyche’s beaten up (plus other crap happens in your life too), and there are days that you just can’t even enough to say that you can’t even. ~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. And after reading through all of these reasons, I’m sending out a BIG HUG to everybody. And actually, you get two hugs because today is National Hugging Day. Y’all Rock!
Don’t Forget!…I’m doing the PANDAS/PANS-GRAMS again for Valentine’s Day. Click here for details and to submit your love notes for your sweeties. (Note: I’m totally cool if in addition to your PANDAS/PANS Kids you want to send notes to other Parents, Buddies, or Doctors/Researchers too.) Please send your valentine messages by the end of the day on Friday, February 10th. THANKS! I love the love we all share. <3
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.