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3 things I’ve learned about fake news from mental health advocacy

I was plunged into the mental health world when my son was 7 and made his first suicide attempt.  I got him help, of course, but I needed to understand what was happening to him and to our family.  Overnight, I became a mental health researcher and devoured any and all stories I could find about mental illness.  I depended on the integrity and truthfulness of good reporting.  I also developed a pretty good hogwash detector.

I’ve discovered lately that I need all those skills and more.

Stories and accusations about fake news crop up everywhere you look.  According to the Mirriam-Webster dictionary, the word “fake” is in the top 30% of words looked up and means not true or real.  When it’s applied to a news story or new information, it’s intended to disparage the reporter, the sources or the content.   I can tell you from personal experience, however, that just because the truth or information is hard to handle, doesn’t mean it’s fake.

Fake news and information rely on the vulnerability of the person hearing or reading it to gain traction.  Believe me, I’ve been there.  When my young son would have a meltdown and then weep afterward that he was bad, I wanted to believe it was temporary, didn’t need serious treatment or was just a phase.  Sure, he was out of control.  Yes, he sometimes hurt himself.  But he felt remorse, so didn’t that count for something?  When therapists and teachers told me not to worry, part of me wanted to stop looking for the tough answers.  I was tired and overwhelmed.   I didn’t want to hear anything that was hard to handle.

Media outlets, whether they are mainstream, lean to the right or left, often report stories differently.  They don’t agree on the focus.  Just like the media, different parts of the children’s mental health system never seem to agree.  One professional will offer a different prognosis for your child than the next one.  Another one will come up with a completely new diagnosis, when you’ve already got three. Like many parents, I heard wildly different recommendations from the psychiatrist, the teacher and the therapist.  The psychiatrist (who turned out to be right) thought my son had a pretty serious mood disorder.  The teacher thought my divorce, our move and change of schools were to blame.  The therapist didn’t want me to be alarmed since children often grow out of their problems.  They couldn’t be all right, could they?

I had to learn to listen with both my head and my heart.  I needed to face the difficult facts and also feel the compassion being offered to me.  I learned that people have different training and biases and are often blind to the fact that they could be misleading you. Sometimes it’s not intentional.  Sometimes it feels like it is.

My son had four different psychiatrists before he turned 12.  One, Dr. G, was especially charming and very confident of his viewpoint and recommendations.  During one visit, he looked me in the eye and spoke charismatically and sincerely.  He said he wanted to retry a medication that had been a disaster a year ago.  He said, “We both want what’s best for your son and this is absolutely the right move.  As soon as we get up to the right dosage, he is going to be a different child.  You’ll be amazed. Just trust me.”

I am a pretty good critical thinker and know how to wade through information.  But I didn’t listen to myself.  Instead, I did trust him and that medication was a disaster once again.  My son ended up in psychiatric crisis.

Dr. G was likeable, charming and smart.  He was confident that he was a good doctor and overall I think he was.  But I had a very complicated son, whose medication reactions were unusual and extreme.  What Dr. G told me – that my son was going to do well and be a different child – was wrong.   I trusted his information because he was the one saying it, not because it was true.  I relied on how much I liked Dr. G.  I confused the speaker with the speech and forgot I was an expert too. After that, my hogwash detector got louder and less forgiving.

Between my hogwash detector, wisdom gained from advocating for my own child and later, other families, I’ve learned some key points.  Those things are turning out to be pretty useful when confronted by fake news.

  1. Don’t confuse how you feel about the source with the story being told. Just like Dr. G, many people are wonderfully persuasive and you want to believe them.  I’ve had several friends tell me news items that I half believed because I liked them, later checking the items out and seeing they weren’t real after all.  We all know who has rigorously checked something out and who isn’t so careful.  How you feel about someone cannot substitute for carefully vetting the information.
  2. Watch out if the information or news is focused on attacking someone. Reliable sources report the facts, which are different from opinions.  I have been disparaged and disrespected as a parent more times than I can count.  Not because I was wrong but because emotions were high or bias against parents was in play.  Good information and real news is about what is happening in front of us and not about personality.  Did I mention that someone attacking me or another parent has ramped up my hogwash detector?
  3. Beware of polarizing tactics. I found out early on that different parts of the children’s mental health system often don’t agree.  There is a lot of finger pointing by schools, by hospitals, by clinics and others.  No one wants to be accountable.  When polarization is at its worst, nothing productive happens.  Children and families don’t get what they need.  It’s the same in a polarized news environment.  We agree on very little and very little gets done.

There were times when the news about my son’s illness was awful and I confess I said to myself, “I just don’t believe this.”  I wanted to believe the less troubling stuff and ignore the rest.  Sometimes I did, but mostly I learned that the truth helps me make better choices.  I learned to value integrity and good reporting.  These days, it goes far beyond the mental health world.

Asking “Do you need a toothbrush?” can be a small bridge to support

When you take your child to the emergency room in any part of the state, you know you’re there for a bunch or reasons:  unavailable doctor hours, urgency, crisis, and most of all, acute evaluation to get you connected to admission. For parents, it feels pretty overwhelming the minute you step through the door.  You are scared, devastated and shaken and it feels like you need everyone there to get you through it. If your child needs to be admitted to an inpatient bed, you also look to connect to the doctors, nurses and staff.  Sometimes, you begin to trust and lean on them.

That is especially true for psychiatric emergencies. Here in Massachusetts we have mobile crisis and community supports to hopefully guide the process.   There might be a family partner, a person with lived experience, who knows what this all means and can explain to you or support you as you walk through it.  That person can listen, increase how comfortable and connected you are.

Emergency rooms and hospitals can be a pretty different experience, especially when you have a child with mental health needs. When your child is a young adult over the age of 18, it’s even harder and there is extra anxiety and fear.  I remember sitting with my son who had requested that I stay with him as he was being seen. He had turned 18 and I wasn’t allowed in – unless he asked me. Fortunately for me, it was a time when he was not in a psychotic state and could invite me to support him. My fingers were crossed and  I was thankful his level of paranoia and hallucinations was low so that we could remain a united front — a family of an adult child with an adult mom.

It was different and it was scary. Adults who had overdosed were there and some were detoxing.  Adults with acute psychiatric symptoms were there and some were screaming or violent. Some people had been waiting for days for help.  There were 2 or 3 who were locked in another room or tied down and medicated to be quiet. They were being managed, but not treated.  Where do you go? What do you do?

I felt like I was reliving the noise, visions and memories that I’ve had when I have supported families across the state who need mental health treatment for their child. But here, it was so hard to make the connection with people so they’d understand that the reason that they were waiting 7 days, 10 days or even more in an emergency room for care wasn’t them.  It is the lack of beds and the multiple other people waiting to get treatment too.

As a parent you wait, sleep and walk back and forth trying to count down the time that is passing. You are trying to remain the strong wall for your child.  You are there. You crave conversation, you crave a break, you have to ask many times for a toothbrush, food, water and to use an outlet to charge your cell or use someone’s phone to call and check on the rest of your family.   You wonder why they make waiting so tough on parents.

If you are in the emergency room for medical care,  you are offered these things. When you are there for a psychiatric crisis, it’s different.  Mental health has stigma, blame and judgement woven into the approach sometimes and it spills out on the young person and the parent.  I smile when people talk about “complex children.”  Myself, I call them the ”unique children” who need support and so much else.

Who are they, these unique children and their families? They are children and youth with autism, violent behavior, eating disorders, gender identity concerns, and sexualized behaviors. They are children who are sometimes hard to treat successfully.  They are children who burn out their parents and often their siblings. They are the children that need support ASAP, not waiting in the hospitals until someone or something is asked or pushed or goes the extra mile to get that kid in.

When I first began to advocate for my child’s education program, I never thought I would have to learn the special education laws or strategies to use them.  When I first brought my child to treatment, I didn’t realize I would need to learn to call the insurance company and even appeal.  Most of all, I thought that if I could get medical care for my child with mental health needs it would be much easier to get care for his brain!

In Massachusetts and across the country, we are talking about integrating medical health care and mental health care to create a brave new health care world.  This is exciting.  It’s going to be quite an undertaking and will need the voices of youth and families to work and tackle the problems.   It also is going to need all that stigma and  judgment and blame to go away and have real empathy for  what families go through and that the heart and brain are equal in care.

One way to start is that if your see a family waiting with their child or young adult in the middle of a psychiatric crisis, show that caring right now.  Ask, “Do you need a toothbrush, a phone charger, some water or something to eat?”  We have to start somewhere to make this happen.  Let’s start first in treating all people like humans in the emergency room and teach the system that the brain deserves respect and understanding.  The parents, youth and young adults do too!

Meri Viano is our guest blogger.  She is the parent of two sons and a daughter who continue to inspire her blog posts.