Social and Emotional Support: Keys to Recovery

A stroke affects more than brain cells – it impacts every area of the survivor’s life, as well as the lives of the survivor’s loved ones.



A stroke affects more than brain cells – it impacts every area of the survivor’s life, as well as the lives of the survivor’s loved ones.

Physical recovery generally has limits, set by such factors as the location and severity of the brain injury and how much rehab the survivor receives. On the other hand, emotional recovery can go on forever.

Social interaction and simply feeling connected to others helps ease the depression and isolation that are common after stroke. This is important because depression is a debilitating condition that derails recovery and is almost impossible to overcome alone. We talked about social support to Barry Jacobs, Psy.D., a clinical psychologist and author of The Emotional Survival Guide for Caregivers, and Art Gottlieb, a survivor for more than 40 years and author of Stroke, An Owner’s Manual.

SOCIAL & EMOTIONAL SUPPORT

Dr. Barry Jacobs

“Stroke can be incredibly isolating,” Dr. Jacobs said. Sometimes this is the result of mobility issues that make it difficult for survivors to get out. For those who have aphasia, it may be the frustration that comes with the inability to communicate clearly (or at all). For some survivors, their deficits are a source of embarrassment. Whatever its cause, the cure for isolation is other people, Dr. Jacobs suggested.

Social support is as important as assessment and physical therapy to stroke treatment, according to scientific studies. Research published in a recent issue of Stroke: Journal of the American Heart Association also suggests that it’s the prime predictor of how survivors adjust to disability and depression long-term.

Stroke support groups offer social support that many survivors and caregivers say began their emotional recovery. Undoubtedly there are many reasons for this. One thing is for sure – everyone in the group is walking a similar path. They may have different deficits, but they have most likely faced similar challenges and had similar emotions. In a support group, “been there, done that” is the price of admission.

Another reason support groups make such a difference is that survivors challenge other survivors to get beyond their doctor-imposed, therapist-imposed, family-imposed and self-imposed limitations. Survivors are often given a “cultural pass” from society because no one believes they can do anything anymore. Good stroke groups don’t accept that as true.


NO PITY PARTY

Art Gottlieb

Survivor Art Gottlieb was a facilitator at the Stroke Support Association of Long Beach for many years and is a strong proponent of the healing power of groups. “Many survivors I met over the years believed that such groups consisted of people who basically talked about their suffering and had a place where they would cry out their pain or complain,” he said. “Our group prided itself on being a place where we all understood what was happening or had happened to the members, whether survivors or family caregivers, and we could share what we had learned about coping.”

 

Groups also benefit caregivers by allowing them to connect with other caregivers, to validate their feelings and get insights and strategies from others who have walked the part of the path they are now on. A survivor once gave this clear explanation of the reason support groups work: “Sometimes you get the answer you need. Sometimes you have the answer someone else needs. Either way, it’s a blessing.”

ATTITUDE ADJUSTMENTS GIVEN FOR FREE

Attitude plays a big part in both emotional and physical healing. Stroke support groups give survivors the chance to be around people with great attitudes. Survivors often find that the can-do spirit of an effective stroke group is infectious and changes the trajectory of their recovery.

Many support groups break into survivor and caregiver groups at their meetings. When Art Gottlieb attended the Long Beach group, it was large enough that, “we broke up the groups by age so that the particular problems related to the very old or very young could be addressed more easily,” Gottlieb said. All survivors were encouraged to communicate by whatever means they could. “We gave patient attention to those who had no voice in order to eliminate any feeling of inadequacy. And most important, everyone shared a caring and non-judgmental acceptance.”

In Gottlieb’s mind there is no mystery in a group’s power to heal stroke families. It is the power of human contact. “The company of others is perhaps the most important element in stroke recovery,” he said. “Isolation can lead to depression and any number of negative feelings, plus it reinforces feelings of being different. But stroke disabilities are not shameful and don’t need to be hidden.”

Some of the good that a support group does happens simply by stroke families getting out of the house. Seeing new faces and hearing different voices is a great antidote to watching TV. “In-person groups create opportunities for greater human contact and the chance to develop friendships outside the group,” Dr. Jacobs said.

Of course, for many survivors “getting out” is easier said than done. Many face physical barriers and negative self-judgments, and they may feel like they are imposing on others by asking for their time or help. “Some people would rather stay home than feel like a burden,” Dr. Jacob said. Fortunately, Internet support groups offer many of the benefits of emotional support and information swapping that regular groups offer. “Online groups offer a greater degree of anonymity that enables people to be more open and vulnerable with their feelings,” he said. (See “New Online Support Network”)

GOING BEYOND THE GROUP

By no means should social and emotional support be limited to support groups. Finding ways of connecting to others through immediate and extended family and community organizations (such as a church, synagogue, community center or senior center) is even more important day-to-day than support groups and may help make up for lost friendships.

Waiting for others to connect with you is not typically a winning strategy. Over the years we have heard from many stroke families about the pain and disappointment of losing relationships. It may be unrealistic to expect others to easily overcome their discomfort with the changes to a survivor’s physical capabilities and personality.

“Unfortunately, survivors will probably have to take the initiative and reach out to others,” Dr. Jacobs said. “Others often don’t know what to say or do and hold back. That may mean that survivors’ overtures may be rejected at times, causing hurt feelings.”

The alternative to getting social support is staying at home alone. Dr. Jacobs outlined the results of this alternative: “Survivors are setting a limit on what they can achieve because by not getting out, they recover less, and that really compounds the disabling effects of a stroke,” Dr. Jacobs said. “Social isolation impedes recovery because isolation leads to depression. People who feel isolated feel bad about themselves, which makes therapy and recovery more difficult, and it makes it more difficult to accept the life they have now.”


The Benefits of Giving Support

  • Feeling a greater sense of purpose and meaning in your life through helping others
  • Developing a greater sense of self-esteem and decreased depression because of the positive difference you’re making
  • Making meaning of your own tragic experiences — making lemonade out of lemons

The Benefits of Getting Support

  • Feeling like your own experiences, fears and aspirations are validated
  • Gleaning new ideas and perspectives that may be important to your own recovery
  • Learning about new medical and therapeutic advances that may be pertinent to you
  • Gaining a sense of belonging

See also:

New Online Support Network

Thoughts of a Veteran Support Group Leader

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AHA-ASA Resources

The Support Network

When faced with challenges recovering from heart disease or stroke, it’s important to have emotional support. That is why we created a network to connect patients and loved ones with others during their journey.

Stroke Family Warmline

The Warmline connects stroke survivors and their families with an ASA team member who can provide support, helpful information or just a listening ear. We have trained several members of ASA's national call

Let's Talk About Stroke Patient Information Sheets

Let's Talk About Stroke is a series of downloadable patient information sheets, created by the American Stroke Association, that presents information in a question-and-answer format that's brief, easy to follow and easy to read.

Request Free Stroke Information Packets

Fill out this online form to request free information about a variety of post-stroke topics.

Caregiver Guide to Stroke

The Caregiver Guide to Stroke is meant to help caregivers better navigate the recovery process and the financial and social implications of a stroke.

Tips for Daily Living Library

This volunteer-powered library gathers tips and ideas from stroke survivors, caregivers and healthcare professionals all over the country who’ve created or discovered adaptive and often innovative ways to get things done!

Stroke Support Group Finder

To find a group near you, simply enter your ZIP code and a mile radius. If your initial search does not pull up any groups, try
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