Mental Well-Being

Why is it essential for those with HCM to pay attention to their mental well-being? 

Your mental well-being is as important as your physical well-being.  Ensuring that your physical health is well managed by professionals who have a deep understanding of HCM is one important tool in your HCM Toolbox. Remembering that not only must we live with the everyday challenges of life but also with the complexities that HCM brings, such as managing symptoms, healthcare access, family screenings, and communications with family members about your condition and their risks for HCM are just a few of the issues people with HCM must navigate through, its best to ensure your mental wellbeing is getting the attention it deserves. 

Taking steps to improve your mental well-being can even improve your physical quality of life. 

What are some ways HCM affects mental health?

A new diagnosis of any condition can be challenging. Still, with HCM, your problem is at the heart of the matter… and we all know how important your heart is to life itself. The path to diagnosis can be long and challenging or short and scary. People with HCM often wonder what they did "wrong"—you didn't cause your HCM with your diet, exercise habits, or other behavior. 

HCM patients worry about what will happen with their HCM, as we know the path can be very different for everyone. Whether you are newly diagnosed or have lived for years or even decades with a diagnosis, a new symptom or test result can cause concern and even anxiety in some people.  You can address some of these worries by learning about HCM and talking to a mental health professional to support you through the journey. 

Learn more about HCM to reduce your fear. This will decrease your anxiety when your symptoms change or you hear about someone else's situation. Everyone's HCM is different, and no two people have the same paths with the disease.

HCM runs in families. It can cause guilt for parents who have passed it down to their children. Some families with a history of HCM have lost loved ones to HCM, which is traumatic. 

Any chronic illness can create feelings of sadness, loneliness, and worry. In families that have experienced loss or serious complications, including sudden cardiac arrest, there may be trauma. As a result, post-traumatic stress disorder may develop. Help is available. You can always call the HCMA to learn more about how to find services. 

What may help those with HCM to maintain a healthy mental state?

Knowledge - a strong understanding of your condition is a great first step to finding balance in living with HCM. Knowing what resources are available to you can help you stay calm and centered. 

Support - people with HCM need a solid support system to help them process their challenges. Sometimes, friends and family are great support. Other times, it may feel like they just don't understand. Your family or friends may wonder why you can be active one day but not on other days. 

Community - it helps to have a network of people with similar experiences. You are not alone, and the HCMA can help!

How can the HCMA help support your mental health?

The HCMA has resources to help you. Start with our Intake and Navigation Call service. You get personalized help and advice from expert patient advocates at the HCMA. 

We run a private Facebook group to give HCM patients and caregivers a place to support each other. 

We offer Peer Discussion Groups via Zoom so that HCM patients can talk to each other. Sign up for our groups or classes for the Newly Diagnosed and those having Myectomy surgery.

Membership is not required to use these services, and we offer Zoom appointments to those outside the US.

We are proud to have a new program in development called "Hearts and Minds." We will provide updates on this program through our podcasts, newsletters, and website.

Where else can you find help with mental health issues?

If you are struggling, please consider a mental health therapist to talk to. Your doctor's office may have a therapist they work with. Your health insurance can direct you to a therapist in their network. It can be helpful to find a therapist who deals with chronic health conditions, trauma, or PTSD. Many therapists now offer telehealth services, allowing you to access care from the comfort of your own home.

Remember, the first therapist you work with may not be a great fit for you.  You may need to try a few before you find the right one.

How can you get help in a crisis?

If you are in the US and have a mental health crisis, you can call or text 988 to reach the Suicide and Crisis Hotline.