You and your family have been through the trauma of a stroke. You have progressed nicely through rehabilitation and feel optimistic about the future. What is next?
I am frequently asked, “Should I join a support group? I’ve had a stroke, a brain injury, or I am going through chemotherapy for cancer. Will a support group be helpful?”
The answer is, “maybe.”
Many times people ask their doctor questions and they want a yes or no answer. But, the doctor says, “maybe.” This is one of those “maybes.”
Consider the benefits
A support group brings people together who have a common experience. People who’ve been through the healthcare system can help you navigate it. Where can you obtain the necessary resources or supplies? How do you navigate the complexity of insurance companies?
There is the social aspect of talking to people who have a similar problem. As a physician, I may know how to treat your medical problem, but I have never walked in your shoes. You have joined an exclusive “club,” and talking with people with similar problems reduces the feeling of being alone. It is a safe environment in which to share your feelings and talk about your life experiences.
You are probably thinking, “This all sounds wonderful. Are there really any drawbacks to being in a support group?” Yes, there can be. Depending on the support group, you may have some people who are very negative and complain a great deal.
You may be doing fairly well and find it does not help you to have to deal with other people’s problems. Some people may monopolize the conversation or you may get bad medical advice. It can be similar to going online where you have to be very careful about which websites you visit and trust. Support groups have a “chemistry,” and you will need to find the right fit for you.
If you are still unsure after you’ve gone to a support group two or three times, nothing says that you have to keep going. You may want to try a different group.
How do you find a support group?
The case manager or social worker at your hospital should be able to get you the information you need. An online search of your community under stroke, brain injury or multiple sclerosis will locate those support groups in your area.
The American Stroke Association is an excellent resource for stroke support groups in your area. Across the country, many Encompass Health rehabilitation hospitals host support groups available to the community. Search for a stroke support group in your area.
If you want to start your own support group, the ASA has detailed information on how to start one, as well.
It’s going to be a personal decision and it may take a while to decide what you want to do. But, don’t be afraid to explore the possibilities