Mental Health

Living with a SADS condition isn’t always easy. You may find yourself struggling with anxiety, PTSD, depression, or a sense of isolation following diagnosis; or experience these symptoms as a result of treatment for your SADS condition, like a device.

We want you to know that you’re not alone. During a meeting with the FDA in June of 2023, we learned that people living with the SADS condition ARVC rated anxiety and depression as one of the most burdensome health effects that they experienced on a daily basis.

Below, you can find a list of resources we’ve compiled to help you navigate mental health with a SADS condition. Above all, we want to let you know that we’re here for you on your journey, and that you are not alone. If you are looking for something specific that you can’t find here, please reach out to us.

We also offer moderated Support Groups at the SADS Foundation, where you can connect with others who truly understand what you’re going through. You can view all of our Support Groups here.

In addition to these resources, you can also check with your primary care physician for mental health resources. 

Mental Health Resources

Counseling/Therapy

United Way

United Way is a great place to look for mental health resources in your state.

A Therapist Like Me

This is a wonderful resource to help you find a licensed therapist that looks like you! This website gives you access to a directory of diverse therapists where you can narrow down your search by ethnicity, gender, disability, language, neurotype, etc.

Better Help

This is a great option to find a licensed therapist that is able to support you through online therapy. It is a trusted website used by multiple hospitals where you can complete a questionnaire and get matched to over 20,000 therapists.

Find Treatment

The Substance Abuse and Mental Health Services Administration (SAMHSA) website can help you locate a counselor near you.

InnoPsych

InnoPsych was founded by Dr. Charmain Jackson when she found herself searching for a therapist that identified as a person of color. She found this process daunting, so she created InnoPsych, a website to help you find a therapist of color!

Dr. Jen Cory

Dr. Jennifer Cory is a psychotherapist who founded the Heart Initiative to support those living with chronic conditions. While not currently accepting patients, she has wonderful resources on guided meditation and building resiliency.

Latinx Therapy

This is a fantastic resource to help you find a licensed therapist that serves the Latinx community. You can narrow the search by specialty (trauma and PTSD, grief and loss, anxiety, etc.), migration background, cultural identities, etc.

Mental Health America

Mental Health America provides great information about mental health, as well as resources to help you find a mental health provider near you.

NQTTCN

NQTTCN stands for the National Queer and Trans Therapists of Color Network. This website is created for QTBIPOC to find QTBIPOC mental health providers. Their Mental Health Practitioner Directory has more than 300 providers, all of which are licensed, pre-licensed, and/or certified.

Find a Therapist Near You

This is a great resource to help you find a licensed therapist. You can first narrow down search results by city/zip code and then filter those results by gender, insurance, age, language, ethnicity served, etc.

Soul Sprout Mindful Care

Soul Sprout Mindful Care is dedicated to providing outpatient telemental health services to residents of Massachusetts and Georgia. Soul Sprout is rooted in providing service to diverse individuals, which you can read more about on this site.

Therapy for Black Girls

This website is dedicated to providing mental wellness to Black women and girls. You can use this website to help find a therapist, find a good book to read, or find community with other black individuals!

PTSD

National Center for PTSD

The National Center for PTSD is a great resource to help you learn about PTSD, its symptoms, and treatments. There are also links to help you find mental health professionals.

What’s Your Grief

A website that provides support for those who are experiencing post traumatic stress disorder (PTSD) from a traumatic event. There are helpful articles and resources that help you work through your PTSD.

Blogs

A Bed for My Heart

A Bed for My Heart is a grief organization founded by Angela Miller, a mother who lost her young child and channeled her own pain and grief to create a space for those also grieving the loss of a child. This website provides you with amazing blogs and grief coaching. (Rebecca and sister used this after loss of Eevee)

Mindfulness

Tara Brach

Tara Brach is a meditation teacher, psychologist, and author. On her website, you can find her books and teachings as well as online retreats focused on mindfulness and friend/support groups on a variety of topics such as stress and anxiety, grief and loss, and relationships.

Other Resources

Dr. Thema

Dr. Thema is the 2023 president of the American Psychological Association. She recently published a book on reclaiming yourself after experiencing trauma. There are great resources found on her website, including access to her podcast The Homecoming Podcast, which covers a wide range of topics like grounding and soothing, and choosing self love.

Dr. Nedra Tawwab’s Worksheets

Dr. Nedra Tawwab, a licensed therapist and New York Times bestselling author provides free worksheets that are centered around identifying your feelings, intentions, and process.

Books

Trauma & PTSD

Healing Trauma by Peter A. Levine

In this book, Dr. Levine, writer of Waking the Tiger: Healing Trauma, builds off of the foundation set by his previous book to provide a guide on how to work through your trauma and heal. Additionally, Dr. Levine gives us access to somatic experiencing exercises that you can do at your leisure. Here is an excerpt:

“In working with trauma for over three decades, I have come to the conclusion that human beings are born with an innate capacity to triumph over trauma. I believe not only that trauma is curable, but that the healing process can be a catalyst for profound awakening – a portal opening to emotional and genuine spiritual transformation. I have little doubt that as individuals, families, communities, and even nations, we have the capacity to learn how to heal and prevent much of the damage done by trauma.”

Homecoming: Overcome Fear and Trauma to Reclaim Your Whole, Authentic Self by Thema Bryant

In this brand-new 2023 book, Thema Bryant, a renowned expert in trauma, teaches you how to come back to yourself. Often, trauma has the ability to distance us from our true selves. In this guide, Thema Bryant encourages us to regain access and practice self love and selfcare. Here is an excerpt:

“I am aware that many of you on this homecoming journey may not have a lot of outward signs of disconnection. However, homecoming is a matter of the heart. It is not about the appearance of things, but about how you feel – the condition of your spirit and the inner workings of your mind. You can have the resume, relationship, and social media posts that look like happiness but still be unfulfilled.”

My Grandmother’s Hands: Racialized Trauma and the Pathway to Mending Our Hearts and Bodies by Resmaa Menake

Trauma is most often complex, containing many layers. One of the layers that may play a role in our trauma is race. Racial trauma can live and affect our bodies, as well as affect the way we react and experience our future traumas. Here, Resmaa Menakem beautifully explains racial trauma and provides you with a step-by-step guide to healing. Throughout the book, there are also “body-centered practices” that allow readers to ground themselves. Here is an excerpt:

“In America, nearly all of us, regardless of our background or skin color, carry trauma in our bodies around the myth of race. We typically think of trauma as the result of a specific and deeply painful event, such as a serious accident, or the news of someone’s death. That may be the case sometimes, but trauma can also be the body’s response to anything that it experiences as too much, too soon, or too fast.”

The Myth of Normal: Trauma, illness, and Healing in a Toxic Culture by Gabor Maté with Daniel Maté

This book discusses society and explores the question we should be asking – what is normal? Dr. Gabor Maté, a renowned physician delves into the standards that our society has created, one that has normalized trauma and stress, and reminds us the importance of putting ourselves first. Here is an excerpt:

“The usual conception of trauma conjures up notions of catastrophic events: hurricanes, abuse, egregious neglect, and war. This has the unintended and misleading effect of relegating trauma to the realm of the abnormal, the unusual, the exceptional. If there exists a class of people we call “traumatized,” that must mean most of us are not. Here we miss the mark by a wide margin. Trauma pervades our culture, from personal functioning through social relationships, parenting, education, popular culture, economics, and politics. In fact, someone without the marks of trauma would be an outlier in our society.”

The Pain we Carry: Healing from Complex PTSD for People of Color by Natalie Y. Gutiérrez

This is a book written for and by people of color. Because trauma can be complex and intertwined with other experiences, Gutiérrez hones in on complex-PTSD and provides the reader with ways to not only recognize the toll it takes on the body, but what to do to heal with meditation, reflection, and loving-kindness practices. Here is an excerpt:

“When was the last time you gifted yourself inner peace? Sometimes inner peace can feel more like a privilege than a right. You’re deserving of reconnecting with your inner peace, and it is always within you. Your inner peace is underneath the rage, grief, fear, shame, and anticipatory loss. Many times, we are so consumed with these heavier emotions that we don’t realize how nearby we are to peace. The goal isn’t to avoid ever feeling uncomfortable feelings, but rather to not be overwhelmed by them so often.”

Tapping In: A Step-By-Step Guide to Activating Your Healing Resources Through Bilateral Stimulation by Laurel Parnell

In this book, Laurel Parnell walks you through the technique of tapping your fingers, a technique that stemmed from Eye Movement Desensitization and Reprocessing (EMDR) therapy. She delves into the history and practice of bilateral tapping to cope from having experienced trauma. Here is an excerpt:

“Within each of us is a hidden potential, a wellspring of untapped natural resources we can use to heal our psychological wounds and help us better navigate challenges we face in our lives. The problem is that these resources too often remain buried, as we don’t know how to access them. We dig in the wrong place, we don’t think to dig at all.”

Thriving in the Wake of Trauma: A Multicultural Guide by Thema Bryant

Thema Bryant is a prominent expert on trauma. In this book, she talks about how variables like sexual orientation, disability, migrant status, gender, socioeconomic status, religion, and more play a role in our traumas. Through using case examples, she illustrates the complexity and intersection of trauma and our cultural variables. In addition, Bryant provides us with some tools to help both practitioners and trauma survivors thrive. Here is an excerpt:

“At times when the survivor doesn’t want to think about the trauma, memories of the trauma may come to mind. These thoughts of the trauma may be in the form of nightmares when sleeping, flashbacks when awake, or the mental replaying of the event when the survivor wants it to stop (van der Kolk, 1996). The nightmares may be of the actual incident or of a similar incident, or the survivor may not remember the nightmare but wake up feeling afraid and having night sweats.”

Waking the Tiger: Healing Trauma by Peter A. Levine

While Peter A. Levine, a psychotherapist, wrote this book in 1997, its content still holds a lot of truth. Peter A. Levine looks at trauma through the lens of biology and its aftereffects which helps make connections between how wild animals face trauma and how we as humans do. Here is an excerpt:

“Trauma is a fact of life. It does not, however, have to be a life sentence. Not only can trauma be healed, but with appropriate guidance and support, it can be transformative. Trauma has the potential to be one of the most significant forces for psychological, social, and spiritual awakening and evolution. How we handle trauma (as individuals, communities, and societies) greatly influences the quality of our lives. It ultimately affects how or even whether we will survive as a species.”

What My Bones Know: A Memoir of Healing from Complex Trauma by Stephanie Foo

Stephanie Foo: This is a New York Times bestseller where Stephanie Foo shares her own healing journey in working through her complex trauma and PTSD. Stephanie Foo explores how our past experiences can still cling onto our present. It is relatable, powerful, and hopeful. Here is an excerpt:

“Most of these symptoms rang true for me. But it was the hyper-specific ones that freaked me out, like the idea that C-PTSD patients spend their lives in ‘relentless search for a savior.’ How could they have known about that? Somehow, this Wikipedia entry called it. Every time I met someone new who seemed wise and stable and kind, I wondered if they might be the answer to things, if they might be the new best friend who’d finally crack the code, the one who would make me feel loved. I thought this was a weird but very personal trait of mine. And this whole time it had been a medical symptom.”

Mindfulness

Living Well with Pain and Illness: The Mindful Way to Free Yourself from Suffering by Vidyamala Burch

“The key point is that pain is an experience. As anyone with chronic pain knows, that experience is deeply personal, and scientists are finding that the way you experience pain is influenced by many factors in your life. Emotions, beliefs, and attitudes that are influential in your society and culture, as well as past experiences, all play a role in how you perceive the experience we label ‘“pain[3].’”

Homecoming: Overcome Fear and Trauma to Reclaim Your Whole, Authentic Self by Thema Bryant

In this brand-new 2023 book, Thema Bryant, a renowned expert in trauma, teaches you how to come back to yourself. Often, trauma has the ability to distance us from our true selves. In this guide, Thema Bryant encourages us to regain access and practice self love and selfcare. Here is an excerpt:

“I am aware that many of you on this homecoming journey may not have a lot of outward signs of disconnection. However, homecoming is a matter of the heart. It is not about the appearance of things, but about how you feel – the condition of your spirit and the inner workings of your mind. You can have the resume, relationship, and social media posts that look like happiness but still be unfulfilled.”

Mindful Movements: Ten Exercises for Well-Being by Thich Nhat Hanh

This is a great book that provides you with movements inspired by yoga and tai chi that help you reduce stress. Thich Nhat Hanh walks you through each exercise, describing what to do – from the placement of your arms to the breathing technique. Each exercise is meant to incorporate mindfulness, so this is about being present during each movement, not about speed. Here is an excerpt from his introduction:

“Mindfulness is our ability to be aware of what is going on both inside us and around us. It is the continuous awareness of our bodies, emotions, and thoughts. Through mindfulness, we avoid harming others, and ourselves and we can work wonders. If we live mindfully in everyday life, walk mindfully, are full of love and caring, then we create a miracle and transform the world into a wondrous place.”

Radical Compassion: Learning to Love Yourself and Your World with the Practice of RAIN by Tara Brach

RAIN stands for Recognize, Allow, Investigate, and Nurture. Learning more about each step will help you develop your own meditation practice. This is a great book to help you begin to process trauma, especially to relieve some of the anxiety and fear that comes with it. Here is an excerpt:

“The deepest transformations in our lives come down to something very simple: We learn to respond, not react, to what is going on inside us. What happens, for example, when something triggers our anger or anxiety? If our habit is to react by turning on ourselves, or by blaming or hurting other people, or by feeling victimized we are adding to the suffering of trance. But if instead we awaken a mindful presence with the first two steps of RAIN – Recognize and Allow – we are on a path that frees our hearts.”

Wherever You Go, There you Are: Mindfulness Meditation in Everyday Life by Jon Kabat-Zinn

Jon Labat-Zinn, PhD is a scientist, writer and meditation teacher. While this book was first published in 1994, its messages still hold true today. This is a great book if you are just starting your mindfulness journey, providing simple yet effective messages that help you reflect on yourself and your surroundings. Here is an excerpt:

“When we let go of wanting something else to happen in this moment, we are taking a profound step toward being able to encounter what is here now. If we hope to go anywhere or develop ourselves in any way, we can only step from where we are standing. If we don’t really know where we are standing – a knowing that comes directly from the cultivation of mindfulness – we may only go in circles, for all our efforts and expectations. So, in meditation practice, the best way to get somewhere is to let go of trying to get anywhere at all.”

Workbooks

The Anxiety & Phobia Workbook by Edmund J. Bourne

If you are living with anxiety, panic disorders, or phobias, including generalized anxiety disorder (GAD), post-traumatic stress disorder (PTSD), and agoraphobia, this is a great book for you. This book guides you through relaxation and breathing techniques, lifestyle, exercise, and mindfulness tips, as well as new research surrounding each topic.

The Complex PTSD Workbook: A Mind-Body Approach to Regaining Emotional Control and Becoming Whole by Arielle Schwartz, Ph.D.

This is an amazing book that acts as a great complement to therapy. It Is filled with exercises, prompts, and spaces to reflect, all with guidance from a licensed clinical psychologist.

Mental Health Resources for Children

Planting Seeds: Practicing Mindfulness with Children by Thich Nhat Hanh and The Plumb Village

This book reminds us that practicing mindfulness is a pursuit for all ages. In this book, you are guided through activities that you can do together with a child. These activities range from mindful breathing to writing a letter using loving speech. The book can also be accompanied by the audio CD, which has songs inspired by the book, as well as guided meditations.