Your CHD Mental Health Toolkit
Empowered Mind, Empowered Heart
Living with congenital heart disease is hard on your mind, too. This toolbox shares eight kinds of mental health support, from self-care to therapy, all drawn from the lived experience of adults with CHD.
About this guide
Developed by The EmpowerMyCH Research Team and Advisory Board — patients, families, and clinicians
Medically reviewed by
Dates Published · Reviewed
It's okay to not be okay
How common are mental health conditions in CHD?
Adults living with congenital heart disease often carry more than a heart issue. Years of doctor visits, scary news, and worry add up. You are not the only one who feels this weight.
Doctors know this is real. The American Heart Association names mental health as the top issue people with CHD face, after their heart care.1 (source: AHA Scientific Statement, 2022)
Here is what the research shows:
- About half of adults with CHD will have depression or anxiety at some point in life.2 (source: Kovacs et al., 2009)1 (source: AHA Scientific Statement, 2022)
- 1 in 3 to 2 in 5 adults with CHD feel high anxiety.1 (source: AHA Scientific Statement, 2022)
- Up to 1 in 3 have signs of depression.1 (source: AHA Scientific Statement, 2022)
- About 1 in 3 adults with CHD show signs of PTSD (post-traumatic stress disorder).3 (source: Harrison et al., 2024)
You are not alone. What you are feeling is real. There are people trained to help, and they want to.
Who to ask for mental health help
For mental health crisis
Call the 24-hour crisis center at 988 or dial 911 for emergencies.
For a free, confidential service that provides mental health support for anyone in crisis. You can visit:
- Resource: www.crisistextline.org
- Or text HOME to 741741
For ongoing mental health care
You can check whether you have an employer-assistance program (EAP) for mental health services.
Your insurance may cover access to mental health services/ sessions with licensed mental health professionals.
If you don't know where to start
Ask your primary care physician or your adult congenital cardiology team for help.
Free therapist matching for the CHD community
Ollie's Branch — Free Therapist Matching
Ollie Hinkle Heart Foundation connects adults and families in the CHD community with therapists — at no cost. If you don't know where to start, this is a great first step.
Find a Therapist (opens in new tab)How to use your mental health toolbox
Mental health is personal. What works for one person may not work for another. That's why this toolbox offers a variety of tools you can mix and match to build a support system that works for you.
What is a mental health toolbox?
This guide introduces 8 categories of support—from self-care and stress reduction to therapy and medication.
You'll find tools you can use on your own, as well as those that are best used with a provider or other professional.
How should I use this guide?
Scroll through the sections and explore tools that feel relevant or interesting to you. Write down the tools, apps, or strategies you'd like to try.
Come back anytime. Your needs might change, and so can your toolbox.
Mental health toolbox
Below is a list of tools we put together for your toolbox:
- Self-Care
- Social Connections
- Stress Reduction Techniques
- Mindfulness & Meditation
- Coping Techniques
- Counseling / Therapy
- Medication
- Build Resilience — this is a combination of all the tools in your toolbox.
Remember: you don't need to use every tool. Even finding one or two that help can make a meaningful difference.
What do the icons mean
DIY tool — A tool you can try on your own, such as journaling, grounding exercises, or helping others.
Professional or guided tool — A tool that typically involves professional or guided support, such as therapy, psychiatry, or acupuncture.
Mobile app — This means the tool is a mobile app you can download and use on your smartphone or tablet.
How to find an app
iPhone or iPad users
Open the App Store.
Android users
Open the Google Play Store.
Then, type the app name shown in this guide into the search bar and follow the instructions to download it.
What about free vs paid apps?
Free — The app offers helpful tools in its free version; a good place to start.
Paid (or premium) — Some features may require a subscription or one-time payment to unlock additional tools or reports.
Self-care
Relax
Practice ways to relax. Things like taking slow, deep breaths, imagining peaceful scenes, or gently tensing and then relaxing your muscles can help calm you down.
Enjoyment
Plan enjoyable activities. Make time for things you enjoy and that are important to you, like spending time with loved ones or being creative.
PEER EMPOWERMENT
I live a normal life, but I have to be proactive in caring for myself to ensure the best quality of life possible. I think the anxiety associated with having my condition should not be understated.
Help Others
Doing something for someone else can make you feel happier and more connected.
Exercise
Exercise is proven to improve mental well-being and reduce stress.
Eating
Eat healthy food. Eating well can boost your mood and energy levels.
*Talk to your doctor before making major changes to your exercise or diet, especially if you have dietary restrictions.
PEER EMPOWERMENT
Try not to think the worst, and communicate with your doctor and family members what you might be experiencing, good or bad.
Sleep
Get enough sleep. Good sleep can help lower your risk of feeling anxious or depressed.
Some tips for better sleep include:
- Consistent sleep/wakeup time.
- Avoid screens before bed.
- Create a calming bedtime routine.
- Create a comfortable sleep environment.
Finch gamifies self-care by encouraging users to complete self-care objectives in exchange for rewards for a virtual pet bird.
Aloe Bud sends gentle nudges throughout the day, reminding users to drink water, eat, reach out to friends, and perform other self-care activities.
Social connections
Talk
Talk about how you feel. It's good to share your worries or anxieties with friends and family. Talking can make you feel less alone and might help you see things differently.
Other Ways to Connect
- Social media groups.
- Many hospitals and CHD organizations host events and family camps for individuals with CHDs.
Adult Congenital Heart Association (ACHA) Peer Support Program (opens in new tab)
Progressive Adult Cardiac Experience (PACE) Program (opens in new tab)
PEER EMPOWERMENT
Living with CHD can be a challenge but it also offers the opportunity to educate, raise awareness and show others how life can be well lived without fear of the future despite our diagnosis.
Community Events
Visit the My Medical Passport page of your EmpowerMyCH app to see what events are happening virtually and near you.
You can also browse the community events directory on this site to see what's coming up.
Stress reduction
Grounding Exercises
Try grounding exercises when you experience distressing thoughts to help you disconnect from negative thoughts and feelings and refocus.
An example could be:
- List 5 things you can HEAR
- List 4 things you can SEE
- List 3 things you can TOUCH
- List 2 things you can SMELL
- List 1 thing you can TASTE
Conquering CHD Grounding Exercise (opens in new tab)
Journaling
Try these tips to help you get started with journaling:
- Try to write every day.
- Use your journal as you see fit. You don't have to share your journal with anyone.
- Write or draw whatever feels right. It's your own private place to discuss and create whatever you want to express your feelings.
PEER EMPOWERMENT
My mental health toolkit centers around journaling and going to church.
Mindfulness and meditation
Meditation
Meditation is the focusing or clearing of your mind.
The key here is to create a space for yourself where you can breathe and be aware of the moment.
There is no wrong way to meditate.
Free Guided Meditation
Guided Relaxation for Sleep (opens in new tab)
A 10-minute Meditation for Stress (opens in new tab)
Headspace provides mindfulness tools for everyday life, including meditations, sleepcasts, mindful movement, and focus exercises.
Calm focuses on meditation, sleep improvement, and stress reduction through guided breathing exercises, themed meditations, and "sleep stories" that help people fall asleep faster.
Insight Timer provides thousands of guided meditations for free. It's praised for its high-quality content and comprehensive library of meditation resources.
Coping
Coping Techniques
Conquer CHD in the moment with coping techniques to manage stress, anxiety, or difficult situations.
Some examples include:
- Practice 4-7-8 Breathing: breath in for a count of 4, hold for a count of 7, and breathe out for a count of 8.
- Alternately tense and relax your body.
- Briefly rest your head on a table or desk.
- Practice positive self-talk.
- Think of a place you've felt safe.
- Hold a stuffed animal, blanket, or pillow.
- Count slowly backward from 100.
- Give yourself a tight hug.
- Squeeze a squishy ball.
- Tell yourself thoughts are just thoughts.
Bearable excels at comprehensive mood and symptom tracking, allowing users to identify patterns and potential triggers. It offers robust features in the free version, making it an excellent companion for therapy or psychiatric treatment.
Daylio provides an intuitive interface with simple icons for tracking mood and activities. Its built-in report generator with visualization elements helps users monitor their progress over time.
Moodfit, described as a "mood assistant," offers personalized mood data analysis, visualization tools, and mood-improving recommendations.
Counseling
Talkspace connects you with licensed therapists via messaging, voice, and video sessions.
BetterHelp connects you with licensed therapists via text, phone, and video. They even covers disorders such as PTSD.
PEER EMPOWERMENT
Having CHD is my normal. It does not make me different, I simply function slightly different from others.
Talk Therapy
Talk therapy involves talking about your thoughts, feelings, and behaviors to improve your mental well-being.
A counselor or therapist may recommend different types of therapy based on your individual needs. This could include:
- Cognitive Behavioral Therapy (CBT)
- Eye Movement Desensitization & Reprocessing Therapy (EMDR)
PEER EMPOWERMENT
I think it's important to know it's ok and valid to feel how you feel about having a CHD. Everyone's perspective, background, and history are different, so it's only natural that how we manage life with a CHD will be different too.
Alternative Therapies
Complementary and Alternative Therapies can help you manage stress and other symptoms. Examples include yoga, aromatherapy, meditation, and acupuncture.
Creative Therapies
Arts and creative therapies use activities like music, dance, and drawing to help you express and manage your emotions and promote healing.
Support Groups
These are group meetings where you can connect with others who have CHD or other similar experiences.
Medications
It's important to talk to a medical doctor to discuss whether medication is right for you.
Medications
Medications can help manage the symptoms of mental health conditions, but they don't cure them. The type of medication prescribed will depend on your specific situation and might include antidepressants, anti-anxiety medications, or sleep aids.
Comprehensive Support
A combination of counseling, medication, and therapy is common. Work with your doctors to determine what works best for you.
Build resilience
Resilience isn't a single strategy. It results from consistently using the tools that support your mental health. It grows over time as you practice self-awareness, seek support, and apply the approaches that work best for you.
Here, you'll find practical tips for building resilience while navigating life with CHD.
Resilience — Being Resilient
Choose thoughts and interpret life's challenges in a truthful way, and always consider the narrative that helps you become more positive, grateful, hopeful, and strong.*
Ownership — Embrace Being an Expert Patient
Proactively maintaining your general health and well-being as best as you can through self-care is essential before, during, and after any medical procedures.*
Preparation — Knowledge is Power
Studies have shown that being psychologically prepared for medical care benefits our physical, psychological, and emotional health.*
Purpose — Make Space for Meaning
Explore purpose-driven activities like volunteering, advocacy, spirituality, and connecting with others who understand life with CHD.
*These resilience tips draw from Healing Hearts and Minds: A Holistic Approach to Coping Well with Congenital Heart Disease.
#5 — Show Gratitude and Pass it on
PEER EMPOWERMENT
How do we repay all those who have given us so much? In most cases we really can't, and I don't believe that is what's expected of us. I can show them gratitude every chance I get and pass on the love that was given when the opportunity arises. My team will be proud to see me staying strong and sending out hope, love and compassion to others. We may feel as if we are a burden because we need so much from others. Sending out a drop of love, however small we may think the drop is, and watching it being received can invigorate your soul. Pass on what was given to you.
To read all six of Joe's tools in his toolbox, follow the link below.
6 Rules I Live By to Lift the Weight of My Chronic Illness (opens in new tab)
Recap: make your own toolbox
- Self-Care
- Social Connections
- Stress Reduction Techniques
- Mindfulness & Meditation
- Coping Techniques
- Counseling / Therapy
- Medication
- Build Resilience — this is a combination of all the tools in your toolbox.
Toolbox Example on The Mighty (opens in new tab)
Types of mental health professionals
Clinical Social Workers
These professionals have a Master's degree in social work and are trained to diagnose and provide counseling.
Licensed Professional Counselors
These professionals have a Master's degree in counseling or a related field and can diagnose and provide counseling.
Psychologists
These professionals hold doctoral degrees in psychology and can diagnose and provide therapy.
Psychiatrists
These professionals are medical doctors who can diagnose mental illnesses and prescribe medication.
Acknowledgements
Thank you to the EmpowerMyCH Advisory Board and the clinicians who reviewed the content of this toolbox and provided feedback, including:
- Dr. Jill M. Steiner, MD, MS, FACC
- Dr. Julia Codrington, PhD, MA
We also referenced resources related to mental health provided by Conquering CHD.
Keep these resources in your pocket — get the EmpowerMyCH app
EmpowerMyCH puts a digital medical passport, ACHD provider directory, and expert guidance for managing CHD right in your pocket. Available on web and mobile.
Join Now (opens in new tab)Sources
- Circulation: Cardiovascular Quality and Outcomes. Psychological Outcomes and Interventions for Individuals With Congenital Heart Disease: A Scientific Statement From the American Heart Association. (2022). https://doi.org/10.1161/HCQ.0000000000000110
- International Journal of Cardiology. Depression and anxiety in adult congenital heart disease: Predictors and prevalence. (2009). https://doi.org/10.1016/j.ijcard.2008.06.042
- American Journal of Cardiology. The burden of psychological trauma and post-traumatic stress disorder among adults with congenital heart disease: PTSD in ACHD. (2024). https://doi.org/10.1016/j.amjcard.2024.03.007