Mental Health Champions: Why & How Danei Edelen Of NAMI Brown County and PatientsLikeMe Is Helping To Champion Mental Wellness
An Interview With Michelle Tennant Nicholson
Find your tribe. Finding a community of people who understand what you’re going through is a game changer for managing mental illness. You need to understand that you are not alone, and there are plenty of people who are struggling. Finding a community of safe, supportive people literally saved my life.
As a part of our series about Mental Health Champions helping to promote mental wellness, I had the pleasure to interview Danei Edelen.
Danei Edelen is the president for the NAMI Brown County Ohio affiliate. In 2020, Danei won the Ohio News Media Hooper Award for her original column on mental health. Danei is a mental health Community Leader for patientslikeme.
Thank you so much for doing this with us! Before we dig in, our readers would like to get to know you a bit. Can you tell us a bit about how you grew up?
I grew up in a small college town in Haviland Kansas until 6th grade, when my family moved to northeastern Ohio. I’m a wife, mother, and passionate writer with a degree in journalism. For over twenty years I worked in high-tech marketing, but now I’m living my dream on 13.5 acres of land east of Cincinnati.
You are currently leading a social impact organization that is helping to promote mental wellness. Can you tell us a bit about what you or your organization are trying to address?
I’m very passionate about being an advocate for mental health and providing community support, which is why I’m involved with several organizations including the National Alliance on Mental Illness (NAMI) and PatientsLikeMe, a digital platform that empowers patients to navigate their health journeys together through peer support, personalized health insights, tailored condition-specific services, and patient-friendly clinical education. NAMI is the nation’s largest grassroots organization for people like me who are striving to end the mental illness stigma and provide a safe and supportive community of people who understand what you’re going through. When managing a mental illness, it’s so important to understand that you’re not alone. I founded the NAMI Brown County “chapter” in my county because one did not exist when I had my psychotic break and I felt it was a resource that could have helped me sooner and could really help others who are struggling. In July, we celebrated five years, which is a wonderful milestone for any nonprofit to achieve. I’ve also become involved in PatientsLikeMe, an online patient community of over 850,000 members harnessing the power of their health insights through shared experiences.
Can you tell us the backstory about what inspired you to originally feel passionate about this cause?
After my psychotic break, it took me seven years to find a community of safe and supportive people who understand what I had gone through and who had lived similar experiences. People need better resources available to them, but we also need to break the stigma around seeking mental health support. I think it’s important for communities to provide better mental health support, which is why I’ve gotten involved in community-oriented organizations. A friend once said to me “You didn’t read it in a book, Danei. You lived it,” and this always stuck with me. I’m determined to share my story so that I can not only help break the stigma, but also help others who are seeking support know they’re not alone. The pandemic helped people realize that mental health is a serious concern, and I’ve certainly noticed people are more empathetic towards me now, which again re-emphasizes the need to break the stigma.
Many of us have ideas, dreams, and passions, but never manifest them. They don’t get up and just do it. But you did. Was there an “Aha Moment” that made you decide that you were actually going to step up and do it? What was that final trigger?
After I had my psychotic break, I began working in marketing again. After nearly three years back to work, I asked for a legal accommodation for my mental illness, to which I was told that due to my health, I should “work somewhere else”. I was devastated and my psychologist said to me, “you’re not angry, you are in rage.” I used writing as an outlet to help me psychologically put an issue to bed, so since I had my degree in journalism, I dove back into writing. I started writing for NAMI, and I quickly realized that there were other people like me out there. Once I realized I could use my skills, knowledge and lived experience to help others, I knew that I had found my mission. Since then, I’ve written over 60 online articles and have had people contact me from all over — including Canada and New Zealand — to be a part of NAMI Brown County.
Can you share the most interesting story that happened to you since you began leading your company or organization?
One of the most interesting and motivating moments that has happened to me since becoming a mental health advocate was when a man from Canada contacted me after reading one of my articles. His son was currently hospitalized in psychosis, and he was desperate to connect with someone who had lived experience with psychosis. I was able to mentor his son after he was released from the hospital, and he was able to get his life back on track and launch a new career. What took me seven years, took his son seven months. Being able to help someone else get their life back on track was such a significant moment for me, and I will forever cherish that memory.
None of us can be successful without some help along the way. Did you have mentors or cheerleaders who helped you to succeed? Can you tell us a story about their influence?
I am profoundly grateful to NAMI Ohio for helping me find my way and ultimately founding my own NAMI affiliate in my county. I’ve lost two people to suicide, so having found NAMI and the support I received from them means so much to me. I’m convinced that if I had found them sooner, I could’ve found the help I was seeking for seven years. Now that I’ve experienced the impact that having a supportive community can have, I’ve been determined to be an advocate and help others, whether through NAMI or PatientsLikeMe.
According to Mental Health America’s report, over 44 million Americans have a mental health condition. Yet there’s still a stigma about mental illness. Can you share a few reasons you think this is so?
Mental illness affects every family in this country and around the world. One in five people struggles with a mental illness, and due to COVID-19, nearly everyone has had some taste of mental health challenges in some form or fashion. Stigma arises from a lack of understanding, and can lead to discrimination, which is why it’s more important than ever that people champion the prioritization of mental health.
In your experience, what should a) individuals b) society, and c) the government do to better support people suffering from mental illness?
People need to be candid about the mental health struggles they’re experiencing. According to the American Foundation for Suicide Prevention, there were an estimate 1.2 million suicide attempts in the U.S. in 2020. On average, there are 130 suicides per day in the U.S., yet 93% of adults surveyed in the U.S. think suicide can be prevented. We need more resources, and we need more support. From individuals, from communities, from the government. Mental health insurance benefits are lacking and is certainly not prioritized the same as physical health. Mental health needs to be a priority. Celebrities and other notable figures have done a lot to help “normalize” mental health, but people need to see people they can relate to, people like me, a midwestern woman living in the heartland of this country.
What are your 5 strategies you use to promote your own wellbeing and mental wellness? Can you please give a story or example for each?
- Sleep. I cannot express the importance of sleep enough. When it comes to mental illness, my first psychiatrist told me “It all comes down to sleep”.
- Diet and exercise. Weight gain is a major side effect for psychotic drugs, so making sure you’re eating a healthy diet and moving your body is important because the medication might be necessary, and the weight gain can have an impact on your mental health.
- Creative outlets. Having a creative outlet is key for self-care. When COVID first hit, I was in the midst of taking a drawing class, and I started sharing my artwork online, which I strongly believe helped me to heal.
- Seek help. It’s ok to seek mental health help. In fact, most people are encouraged, whether you’re managing a mental illness or not, to find a healthy way to deal with stress and work through the challenges present in day-to-day life.
- Find your tribe. Finding a community of people who understand what you’re going through is a game changer for managing mental illness. You need to understand that you are not alone, and there are plenty of people who are struggling. Finding a community of safe, supportive people literally saved my life.
What are your favorite books, podcasts, or resources that inspire you to be a mental health champion?
PatientsLikeMe is honestly my online medical repository, kind of similar to my “bank” for all of the information related to my condition and I used to always print out my “Mood Chart” for my psychiatrist from the PatientsLikeMe platform. It’s such an important resource that has and continues to inspire me to be a mental health champion. Everyone I’ve connected with has been extremely supportive and empowering, which is huge.
If you could tell other people one thing about why they should consider making a positive impact on our environment or society, like you, what would you tell them?
There’s a quote from Theodore Roosevelt that I feel is extremely appliable and important.
He said “It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”
If you’ve seen a side of mental health and wellness that few others have seen, and you have the skills, passion, and ability to teach others what it’s like, then how are things going to change otherwise?
How can our readers follow you online?
https://daneiedelen.wordpress.com/
This was very meaningful, thank you so much. We wish you only continued success on your great work!
About the Interviewer: Inspired by the father of PR, Edward Bernays (who was also Sigmund Freud’s nephew), Michelle Tennant Nicholson researches marketing, mental injury, and what it takes for optimal human development. An award-winning writer and publicist, she’s seen PR transition from typewriters to Twitter. Michelle co-founded WasabiPublicity.com.
