Beyond the ICU: Finding Support

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Jul 5, 2019 | Annie Johnson | @andreab

Everyone experiences critical illness in their own unique way. There are no two courses of illness or trajectories of recovery that will be the same. Issues like vivid dreams/nightmares, delirium, hallucinations, physical pain/weakness, brain "fog", difficulty with word finding and memory, social isolation, and stress on relationships may be experienced by many people who have been critically ill. Unfortunately many people believe they are experiencing these difficulties in isolation, likely in part due to the fact that most of the people they are surrounded by have not similarly experienced a critical illness. It becomes difficult for a person's previously established social support network to fully understand what they are going through and how best to help.

Thankfully, in 2015 the Society of Critical Care Medicine (SCCM) identified this issue and attacked it head on. SCCM created a post-ICU Peer Support Collaborative through the THRIVE initiative that has now brought together over 20 different hospitals from around the world that focus on creating support systems for patients and family members who have experienced critical illness. A recent publication from this collaborative illustrates the types of support systems that these hospitals have implemented which include face-to-face community-based, online, and clinic-based models to name a few. It has been very clear through the experiences of the collaborative that patients and families can benefit greatly through these support systems.

The overarching message that needs to be shared is this: you are not alone. Despite the uniqueness of all illness and recovery trajectories, many people find commonalities within their experiences. Sharing these experiences with others who have experienced critical illness can lead to validation, comfort, and healing.

So explore the resources that are available to you. Ask members of your critical care team if they know of any local post-ICU support groups or resources for you access. Mayo Clinic is very happy to provide an online support group for patients and families who have experienced critical illness  - available 24/7 to all. The support group can be found by clicking the following link: Intensive Care (ICU) Support Group
I can't tell you what a blessing this group has been to me. The advice and suggestions for sure, but late at night when the fear comes back...I reread the posts and here is proof things do get better."    - Group participant
Other resources can be found on SCCMs website through the THRIVE network: Connect with Patients and Families

Come back soon and join further discussions about what to expect Beyond the ICU.

In the meantime, join our conversation online. Have you or a loved one experienced critical illness/injury? You're not alone. Share your story and connect with others who have been on the same journey: Intensive Care (ICU)