Sitting in waiting rooms, hospital rooms, and bedrooms after your child falls asleep, the emotions can come to the surface. Beyond the sea of tests and possible treatments, you battle with the fear and frustration of watching your little one suffer. This is PANDAS or PANS.
No parent would wish for a sick child, and yet the parents of PANDAS patients face additional pain.
When our daughter was first ill, I remember longing for a different diagnosis — even something more chronic and serious.
How tragic is it that I actually wished it was cancer? Who wishes for cancer?
In my logical brain, I was aware that it made no sense, and sitting here now, it’s embarrassing to even think about. Yet, I can tell you exactly why I would change her condition: the loneliness that comes as a parent of a child with PANDAS.
While my wish seems irrational, so is everything when it comes to PANDAS. While cancer is a horrible diagnosis, your support system knows what to do with that label: they come over, pray fervently, and bring you gifts.
Family and friends band together, creating meal train sign-ups, tackling your laundry, and cleaning your house.¹
People understand what cancer means and what you might need. If your battle is long, they take your kids out so you can have a break, or send you out for the day to get a haircut or a cup of coffee to yourself. They tell you they love you. They hug you. They let you cry on their shoulder.
They encourage you and fight loneliness — after all, they’re your friends and family.
Devastatingly, parents of children with PANS/PANDAS often do not receive this level of support.
On a good day, you can almost hear the crickets chirping. Silence is better than the other options. On a particularly bad day, you’re fighting through judgmental comments. “Gosh, control your kid. Do you even have any parenting skills?” “What is wrong with them? Can’t they just behave?”
You are also the subject of suspicious gossip, as PANDAS can present differently in certain situations. Since your child may not “seem sick” in public, you might be accused of exaggeration or attention-seeking.
I’ve personally seen my daughter’s own psychologist call her “manipulative.”
Between your medical team and your friends and family, it’s easy to feel like you’re drowning in criticism.
If you manage to make it through the judgment and gossip, then there are the dreaded suggestions: “if you would just __________, your child would be fine.” Suddenly, everyone is an armchair expert, suggesting things you’ve likely tried before.
These tired-out ideas come from a natural place: when things go wrong, it’s human nature to step into a problem-solving role. No one wants to see a child they care about hurting! These attempts may come from a good place.
However, when you’re struggling to get through each day, the endless recommendations from your loved ones feel hurtful and insulting.
Parents of children with PANDAS answered two questions for us:
Their answers may surprise you, and possibly even break your heart.
These parents wished you would notice:
These parents reflected on how often they felt judged, saying:
Parents of a child with PANDAS often felt lonely and misunderstood, saying:
What happens when the problem can’t be fixed by good intentions or a quick internet search? Who shows up for you when you’re still battling PANDAS weeks or months later, and they still don’t understand what you’re up against?
I know firsthand how lonely those long days can be.
We are constantly hearing some iteration of, “Have you tried this new thing I heard about on a podcast? You should try that. I had a cousin’s friend’s neighbor who had PANDAS and it might have worked for them!”
While they may come from a good place, these “helpful” suggestions isolate and hurt. It’s so easy to feel undervalued or misunderstood; don’t they know you’ve dedicated your life to finding solutions for your child? Our mental health and sense of community can suffer under the weight of parenting PANDAS.
One response was particularly striking: “I wish they could just love us through it.” At the heart of every lonely parent dealing with this condition, this rings true.
Believe me, we have tried it all, but there is no timeline and each child is different. We long for someone to be a friend, not a fixer. We need breaks from desperately trying to heal our children.
Our team of PANDAS experts can give us behavior therapy or Functional Medicine recommendations. However, there’s one thing that only you can give us: your unique love and support.
As so many parents responded, we want to be asked, “What do you need?” instead of being told what else to try. We want the support you give to families battling conditions you understand. We want to be heard instead of criticized. To cope with this diagnosis, we actually need your help.
There is hope, not only for a PANDAS diagnosis but for parents fighting to help their child’s quality of life improve. Part of the solution is found in each person in our corner.
By refusing to judge, seeking to understand instead of fix, and caring for our mental health, you become an ally in our fight against PANDAS — and against feeling so alone.
So start up that meal train, believe what we’re saying, and lend us your shoulder — we need you on our side. When you make space for us in the midst of our loneliness and when you show up with questions instead of opinions, you are helping our whole family heal.
Sources:
1 https://www.huffpost.com/entry/conscious-relationships_b_4350876
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