You Are Not Alone

Key Takeaways

    • Many survivors, when ready, want and need to connect with peers to share information and experiences. 
    • There are both in-person and virtual support groups on social media and message boards.  
    • Many survivors eventually become advocates and moderators of these groups as a way to give back.
How do I find a support group?

Oftentimes, cardiac arrest survivors feel as if their experience is so unique that it can only be understood by other survivors. You may find yourself wanting to talk to people who really understand what it is like because they have been through it. This can be one of the most helpful things during your survivorship journey. Of course, talking to others and reliving the experience is not healing for everybody. However, if this is something you believe could help you, don’t hesitate to reach out to other survivors. Most of them will be happy to provide support and help you cope with the aftermath of cardiac arrest. Remember, you might not be ready to talk about it for months, or ever, and whichever choice helps your journey is the correct one.

In-person support groups

There may be some in-person support groups available at large medical centers. In rural areas or small towns, connecting with others in person might be harder. Some groups have moved online to become virtual support groups over virtual platforms or social media. This has allowed people to participate regardless of where they live, as long as they have an internet connection. There is a wide range of online support available, especially after the COVID-19 pandemic. One thing to consider is who runs the group. Is it a survivor, a family member, a medical professional, or someone else?

Facebook
On Facebook, there are groups specifically for cardiac arrest survivors and family members. There are also groups for a wide range of medical conditions that can lead to cardiac arrest, including long QT, hypertrophic cardiomyopathy, dilated cardiomyopathy, and many others. There are groups for a wide range of medical device interventions, including pacemakers, ICDs, S-ICDs, and CRT-D devices. There are also online message boards for cardiac arrest survivors. An advantage to these online forums is that people can post questions and receive information at any hour of the day or night.

One FB support group you may find helpful is Sudden Cardiac Arrest Survivors.  This large, active grassroots group is for survivors, co-survivors, and anyone personally affected by cardiac arrest.  They also hold a monthly virtual support group via Zoom.

Some general tips when joining an online support group

Questions that are important to consider while looking for the right fit:

  1. Is the group private? 
  2. Can anyone see what you post? 
  3. Are people helpful and respectful? 
  4. If comments get out of hand, do the moderators step in? 

Some people join an online support group but may find some posts to be triggering and stressful. In that case, consider scrolling past those upsetting posts. Someone is posting it because they are looking for support and are unable to handle it alone. If it is too hard for you, you may consider that this group is not right for you at this moment. 

Some people join groups, then find that they need to take a break for a time. They may return later and feel more comfortable. Support groups are for all people affected by cardiac arrest, and people may be at different stages of their recovery. Keep in mind that support groups tend to have more posts from people who are having difficulties. Treat the forum like a buffet. Take what is useful, and leave what you don’t want. A support group is an extreme example of self-dosing treatments.

Conferences or gatherings

There are also scientific conferences focused on resuscitation and cardiac arrest that encourage survivors, families, lay rescuers, and people who lost their loved ones to participate. One conference that may interest you is the Cardiac Arrest Survival Summit, which is hosted by an organization called the Citizen CPR Foundation. It usually takes place in December every other year. It provides a chance to connect with others and learn about the latest research. There is a special discounted rate for survivors to attend, and some sessions are designed specifically for survivors. There are many opportunities to network with survivors, families, researchers, and medical professionals.

All of these resources give survivors an opportunity to connect with others and develop relationships with people who have had similar experiences.

Sources

Cardiac Arrest Survival Summit: https://citizencpr.org/summit2023/

Thank you to our contributors

Fran Lesicko & Katrysha Gellis

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