How Social Media Made Us Feel Media Awkward.

Social-MarketingSo, this is awkward.
My sister, Elin, and I set out to put a collection of stories together to help other parents and the extended family members learn to manage and advocate for a loved one who lives with serious mental illness. It was borne out of our own need; we wanted these stories for ourselves, to help us better support our loved one who had been recently diagnosed.

The editing process for our Behind the Wall collection was at times challenging. The gravity of the subject matter was palpable and honorably representing the stories and the storyteller, at times, daunting. These are difficult stories to tell and hear, and we felt it important not to sugarcoat. There were times one or both of us had to step away from the emotional intensity. We were confronted with our own relationship to the ideas and realities of mental illness, and how it affects our loved one, each other, and ourselves.

What kept us on task was thinking of the parents who told us after being interviewed that they considered the project important and earnestly hoped their story could help someone else—someone who was feeling isolated and scared as they’d once been. In the end, we received much more than we gave, much more than what we could ever have anticipated. We met inspiring parents who showed us how to be better, more compassionate human beings.

The Behind the Wall collection began five years ago from the time of this writing. As we rounded the corner and saw our collection taking the form of something we felt useful, we recognized that we had more to say—insights we had learned from parents but that didn’t quite fit the story collection format. That’s when we began writing our blog.

The blog turned out to be a good thing. It helped us to continue processing concepts for coping and living with having serious mental illness in the family. And, as luck would have it, when we talked to agents about our book they said, “You’ve got to have a platform! Social media! Blog!”

We thought, “Good for us! For once, we’re following the rules of the game!” Besides the blog, we had also begun using Facebook and Twitter to connect with others who are serious about talking about this important issue. Through social media we learned about many organizations doing good work to support individuals living with mental illness and their families. We learned that social media can be useful!

Our primary motivation for our story collection, blog, and social media has always been to share useful information we learn. We are doing whatever we can to spread the word about the importance of supporting those who live with serious mental illness, and supporting their caregiver/advocate and loved ones. We wanted to participate in spreading the word about the harmful effect of stigma and how it delays treatment, which in turn impacts recovery.

Because every individual’s mental illness manifests uniquely, and there is no “cure” for brain disorders, we never have, or ever will, advocate for a miracle treatment or standard “it’ll fix anything” treatment. While we may describe a particular evidence based treatment that has helped others, we do not advocate a particular medication or the decision to take NO medication.

So, imagine our surprise when we were accused of shilling/helping to promote a company via social media that advocates quitting doctor prescribed medications in place of vitamin supplements. Um. That was awkward.

We’re not saying that this protocol is recommended OR NOT recommended.


Our responses to those we follow on social media are responses to particular statements, or tweets, for example, not endorsements of said tweeter’s whole philosophical stance. 


Our responses to those we follow on social media are responses to particular statements, or tweets, for example, not endorsements of said tweeter’s whole philosophical stance. Advice/comments we advance are those echoed by the many experienced parents we have interviewed. Our goal has always been to bring stories to the forefront because there is tremendous healing in knowing others are living similar stories.

We forward information that includes such things as new clinical studies or literature that may be interesting and useful to others but that are from reputable sources. Because we’ve been keeping pace with the current literature, we can vet it for those new to the journey of managing mental illness, or we may learn about a new study that advances the treatment of mental illness and we want to share it.

That said, while we will not offer advice on treatments, there are a few recommendations we always stand by. And here they are:

  1. Regular exercise is good for everyone.
  2. Everyone benefits from a healthy, nutritious diet.
  3. Treatment sought for mental illness and/ or substance use should be evidence-based, and this means by a reputable source.
  4. When diagnosed with any illness, one should learn as much as possible from reputable sources.
  5. Obtain second opinions. Preferably more.
  6. If a “cure” seems simple, or one that “is being kept from the public by some large entity”, beware. If something is too good to be true, it is not true.
  7. Trust your gut.
  8. If you have been diagnosed with a serious illness, enlist a trustworthy advocate who doesn’t tell you everything will be okay, but who is willing to follow evidence based guidelines for your care when you are unable to advocate for yourself. If you are the caregiver, don’t say everything will be okay, but instead do your homework and understand the illness as well as you can.

 There it is.

We welcome comments.

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A little help here?

Albert Seuss, by Mark Abercrombie

Albert Seuss, by Mark Abercrombie

Being in public, even just standing in the grocery store line with her adult son, used to be embarrassing for Annie. Her adult son can’t be still. He’ll start bobbing his head. His body is jittery. He could easily be mistaken for a tweaker. She shrugs. “You get used to it,” she says. And he’s done worse.

Having a child who lives with mental illness feels sort of like being the parent who carries a newborn and two toddlers with head colds on the plane for a red-eye, only more extreme. Nobody wants to be near that mess, and everyone has an opinion. Also, there’s a lot of glaring.

In the stares and clucking of distaste that parents of atypical children often absorb, there seems to be a less than subliminal message that these parents chose this messy life and if they only desired things to be different, it could be so. As if these parents are weak. But parents of children with mental illness did not choose this club. Their child didn’t either. There are coping skills to be learned, but like those toddlers on a plane, you cannot control air pressure, or sinus pain, or always fix whatever is bothering them.

A person who lives with mental illness sometimes displays odd behaviors. A person with an injured leg may walk funny for a while and it’s the same for an injured brain; it’s not so odd when you think about it in that way, Right? What’s distinctly different is that a child’s mental illness challenges the stamina of parental love like nothing else. That’s in addition to judgment from others. Rebecca, one of our Behind the Wall parents, explained how excruciating it could be when her daughter, Stella, accused Rebecca that she was not her real mother. Stella’s father, Dan, recounts discomfiting conversations with Stella about the chip in her head. But for Stella, who heard voices clearly and sensed smells that others did not, the chip theory didn’t seem so far-fetched. It did make sense to her because her brain was feeding her different signals than what others know to be reality.

Simply spending time with a person who is experiencing a manic episode and/or psychosis presents challenges. It’s not easy. Depending on where a person is on the spectrum of recovery, there are frequent lapses in logical thinking that sometimes lead to risky behaviors and self-harm. Once, Annie’s son broke into a store after hours. He busted the door, got in, then realized he didn’t know what he was doing and left. He didn’t steal anything but damaged the door. His actions didn’t make sense.

Sometimes there are scenes. Ugly scenes. Jennifer, who lives with bipolar and borderline personality disorder, had developed a history of rages and alcohol use by the time she’d reached high-school age. This behavior was never permitted or condoned by her parents. In one incident, Jennifer had been drinking and was raging and throwing things at her boyfriend’s house. Her boyfriend’s parents banned Jennifer. Sadly, they must have also spread the word that she was out of control and it was about bad parenting. Jennifer’s sister, who had never been part of any such incident, was banned from spending time with the family that lived next door to the boyfriend. A loved one’s illness leaks into all aspects of family life.


As one Behind the Wall parent says, most people don’t know what it’s like to have a loved one who lives with mental illness. Good for them. 


Only those who’ve parented a child who lives with serious mental illness can truly understand the challenges involved and the breadth of behaviors that arise because of the illness. Even for these parents, there is much experience required to distinguish between typical bad behaviors versus behaviors driven by the illness. They can’t possibly always get it right.

Parents of children who live with serious mental illness, like those beleaguered ones getting on a plane, aren’t asking for anything more than a little understanding. As one Behind the Wall parent says, most people don’t know what it’s like to have a loved one who lives with mental illness. Good for them. Living with a serious mental illness and being a parent/advocate has challenges that can only be fully understood by others living a similar experience.

Parents whose children live with mental illness aren’t asking anyone to sidle up to their chaos. These parents are also past wishing to be well-liked because major concerns are about keeping their child safe and stable. Parents aren’t asking for solutions, or agreement, or sympathy. Pity is not wanted. Just please don’t judge. And if one were so inclined, even a small gesture of support and kindness goes far for a parent enduring a journey where parental love is infinitely tested.

 

As always, your feedback is welcome.