Peer Support: A critical component to stroke recovery

In this column, stroke survivor and Stroke Onward Executive Director, Flannery O'Neil shares her personal experience of recovering from a stroke and its emotional impacts. As Debra Meyerson and Steve Zuckerman, the founders of Stroke Onward, shared in their last column, the emotional journey in recovery is the focus of Stroke Onward’s mission. They asked Flannery to share more about her personal story and a key resource that has greatly benefited her, the power of peer support.

For weeks before my stroke I was feeling off, experiencing vague and not-so-vague symptoms that indicated something was wrong. But like a typical young person, I figured I could brush it off and talk to my doctor about it at an upcoming appointment. But stroke doesn’t wait for our timeline. I was struck down mid-sentence at work with a stroke that left me unable to speak or use the right side of my body.

I was 34.

Later on, I learned that strokes can happen at any age and that in the U.S. 10% to 15% of them happen in people between the ages of 18 and 45. But at the time, I was stunned with this diagnosis. To further complicate my situation, I was living in a small, rural community. Although I was fortunate there was a hospital nearby, they don’t often see strokes at that hospital and, when they do, they are usually in people decades older than I. Despite arriving at the hospital soon after my symptoms began, I didn’t receive treatment for my stroke until hours later and could begin my recovery process.

I returned home after a few days in the hospital and immediately began focusing on outpatient rehab with speech, physical and occupational therapists. My primary physical issues were fatigue, aphasia, acalculia (difficulty performing math tasks) and lack of feeling on my right side. After several months of speech therapy, I was able to regain my speech and ability to do math. But my fatigue and right-side sensation issues have not returned to what they were pre-stroke. Overall, I know I am lucky that I’ve made an almost full recovery ‒ physically that is.

The emotional impact of my stroke has been the most challenging part for me. Worry crept in quickly. Would I have another stroke? What was my life going to look like? Would I be able to go back to work? And I soon learned that my stroke was caused by a genetic condition, meaning it could happen again. In the blink of an eye, my identity as a carefree, healthy thirty-something was gone and was replaced by someone with a serious, chronic illness.

Lean on your support network

Having a stroke can feel very isolating. In the beginning of my recovery, I leaned heavily on my husband, my mother and a few close friends. Whether it was a home cooked meal, transportation to my therapy appointments, or simply spending time together, their help was so important. I could really feel their love and it truly helped me heal. Studies have shown that strong support networks are linked with better mental well-being and physical recovery post stroke.

But as the days turned to months, I started to feel like something was missing. While my friends and family were empathetic, I needed to be with people who had walked the same road as I and understood more deeply what I was experiencing.

Peer support is golden

I often felt like I had the word “stroke” stamped on my forehead for everyone to see and there was no escaping what had happened to me. No amount of consolation from my friends and family was able to ease these feelings, so I began to explore my options for finding a group of peers that I could connect with ‒ not an easy task in a town of 16,000.

I eventually found a traumatic brain injury (TBI) group nearby and was amazed at the connection I felt after just one meeting. This group welcomed me with open arms and helped me understand that I wasn’t alone. Many others had walked this road before me. Although stroke and TBI are different, they have many things in common. Participating in this group was my first step in my long journey of finding peer support. Apart from the speech therapy to work on my speech and math issues, this has been the most impactful part of my recovery.

Many survivors experience meaningful value from peer support

Recent research reinforces the value of participating in support groups. “Peer support groups play an important role in stroke recovery by providing tools for effective coping, alleviating psychological stress, and creating an outlet for stroke survivors and caregivers.”

Not long after joining Stroke Onward, I met another young survivor, Kaitlyn Fieseler (seen early in her stroke recovery in this photo with her sisters), whose recovery was also significantly benefited by connecting with peers in a similar life stage. Kaitlyn was also in her early 30s when an accident left her with a devastating stroke, significant aphasia and, eventually, depression.

Kaitlyn found it very hard to connect with anyone in her brain injury recovery program because of the significant age difference between her and the other participants. Many of them had already gone through life milestones, such as getting married, raising children and retirement.  She tried going on several different stroke survivor outings and to group meetings, but still found herself by far the youngest one there.  This disconnect made it challenging for Kaitlyn to progress in her recovery, both physically and emotionally.

Kaitlyn was eventually introduced to aphasia and stroke peer groups online. By finding survivors closer to her age and life stage, she finally felt comfortable being herself. Meeting other people with aphasia in their 30’s gave her a sense of belonging and acceptance that was missing in her life.

Where can you find peer support?

There are many different forms of peer support to suit your preferences ‒ support groups, 1-on-1s, chat groups and more. I encourage you to try different types of peer support to see what works best for you. Fortunately, many communities offer in-person options. And the explosion of virtual meetings during and beyond Covid-19, has enabled survivors from across the country and the world to connect and support each other. Here are a few of my favorite places to look for peer support:

• American Stroke Association Support Group Finder: This search tool contains hundreds of groups across the U.S.
• Virtual Connections: Offers free daily group sessions on a wide range of topics for people with aphasia.
• Brain Injury Association of America: Use this tool to find a chapter nearby where they may offer support options.
• Stroke Related Podcasts: Podcasts are a great option to listen to survivor stories and benefit from others’ experiences.

If you haven’t yet experienced peer support in your recovery, I encourage you to try it. It has been one of the important keys to unlocking lasting healing in my emotional journey. It has also been integral to rebuilding my identity after my stroke. At Stroke Onward, we’ve received great feedback about the positive impacts of reading Debra’s book Identity Theft: Rediscovering Ourselves After Stroke and discussing it with peers using our book guides. We are all social beings and long to be connected with one another through shared experience. Having a stroke can feel very isolating, disrupting our connections with others, especially for those of us with aphasia. Peer support is an important way to build new bonds to support you as you recover both physically and emotionally.

We’d love to hear from you. If you have thoughts about this column, experiences you’d like to share, ideas for us to explore further, or input of any kind, please email us at [email protected].

Stroke survivor Debra Meyerson and Steve Zuckerman, her husband of 33 years and “carepartner” after stroke, founded the nonprofit Stroke Onward to help survivors, families and caregivers navigate the emotional journey to rebuild their identities and rewarding lives. As guest writers, they share their experiences and insights in their post-stroke journey.