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Loneliness as a Parent of a Child With PANDAS or PANS

Loneliness as a Parent of a Child with PANDAS or PANS

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.

Inline Image 1 - Loneliness as a Parent of a Child with PANS/PANDAS - A Lonely Road: long, misty road.

A Lonely Road

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.

What We’re Really Thinking

Parents of children with PANDAS answered two questions for us: 

  1. What is the one thing you wish friends and family would do to support you? 
  2. What do you wish they would understand?

Their answers may surprise you, and possibly even break your heart.

Inline Image 2 - Loneliness as a Parent of a Child with Pans/Pandas - About Our Mental Health: talking with counselor/therapist.

About Our Mental Health

These parents wished you would notice:

  • “That I look stronger on the outside than I feel on the inside.” 
  • “That I’m not canceling or flaking; I’m burned out and need to retreat.”
  • “That we aren’t comfortable asking for support. I wish they would offer it to us.” 
  • “How incredibly hard this is and how I worry that she will be 100% independent one day.” 
  • “That anxiety and OCD are mentally and physically exhausting and we need breaks for our own mental health. I wish they would offer us those breaks without us having to ask.”

About Your Judgments

These parents reflected on how often they felt judged, saying:

  • “Stop judging decisions for our child. We didn’t make these decisions on a whim. A lot of agonizing goes into making our choices. Please don’t try to make him a ‘normal’ child and stop asking me “what’s wrong with him” when he’s melting down.” 
  • “That I’m doing everything I can. There is no need to ask if I’ve tried ‘XYZ.’ I’m doing my best. And when I vent, minimizing hurts. Saying things like, ‘they will grow out of it, that this is totally normal’ is really hard, because it doesn’t work that way.” 
  • “I wish they would help me and stand up for my child in public if they are melting down instead of being embarrassed and telling me people are staring at us.” 
  • “I’m doing my best. I don’t need judgement. My kids will not grow out of this. Every day is exhausting and I wish you cared to listen to my challenges, because it’s so isolating and lonely.” 
  • “I wish they understood how serious this is and just because a person can function in some areas doesn’t mean they have a full life.” 
  • “My child is gifted. I wish they would acknowledge his struggles even though he doesn’t have a learning disorder.” 
  • “I wish everyone understood my daughter is not rude or lacking manners. But socializing and giving hugs make her very uncomfortable.” 
  • “I wish my family would stop talking to me like I haven’t done enough research about medication.” 
  • “I think people oversimplify and need black and white. We live in a gray area that requires a different way of parenting.” 
  • “Your rules don’t apply to us. This illness is unique and she is suffering enough just living in her own body. Please don’t judge and instead bring me some wine or coffee, because I need both.” 
  • “We cannot punish the anxiety out of our kids. Please understand this illness requires a more compassionate, tolerant approach.”

About Being Understood

Parents of a child with PANDAS often felt lonely and misunderstood, saying:

  • “I wish they understood that PANS/PANDAS and OCD are very real and very hard. The ‘everyone has OCD and anxiety’ is so hurtful. If people only knew how hard this all is and did not throw those terms around lightly…” 
  • “Just because my daughter holds in her anxiety around you, doesn’t mean she doesn’t have it. She unleashes when she gets home and it is VERY real and heartbreaking.” 
  • “After choosing to not attend a family function because my daughter’s sensory processing was flared, I received this message from my mother: ‘If you love us, don’t shut us out. Don’t segregate yourselves from your family when we celebrated together for years. I don’t understand. Your daughter needs her cousins.’ She just doesn’t get it and doesn’t try to.” 
  • “I wish they would ask for reading material instead of assuming they know it all. Then maybe that would help their understanding and we can meet in the middle.” 
  • “I wish they would trust our choices, research and doctors and instead of trying to fix it for us.”
Inline Image 3 - Loneliness as a Parent of a Child with Pans/Pandas - What We Really Need, Love (spelled out in flowers)

What We Really Need

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:

https://www.huffpost.com/entry/conscious-relationships_b_4350876

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