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:
- Regular exercise is good for everyone.
- Everyone benefits from a healthy, nutritious diet.
- Treatment sought for mental illness and/ or substance use should be evidence-based, and this means by a reputable source.
- When diagnosed with any illness, one should learn as much as possible from reputable sources.
- Obtain second opinions. Preferably more.
- 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.
- Trust your gut.
- 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.