If you’re a family with aphasia, you may not know any other families like yours. Aphasia is a life-changing event for the whole family.
Families with aphasia can become isolated from their community, church, friends, and other family members. This can happen for many reasons, such as:
- Lack of area aphasia resources
- Lack of medical professional experience and knowledge
- Other medical issues that take priority
- Adjustment to your new lifestyle
- Grief, exhaustion, or stress coping with the effects of aphasia
- Life revolves around therapy
While access to information online has improved in the past few years, many families with aphasia have never met anyone else like them! Family and friends may have slowly dropped out of the social scene because they feel uncomfortable about interaction. Or perhaps you can’t do the same activities you used to share with others, such as tennis or camping.
Friends and family may want to help but don’t know what to do. Caregivers may also become more isolated because they just don’t have time to socialize–therapy, work, family, finances–they all take up a lot of time!
Many people with aphasia may also be embarrassed to be around their friends since they cannot communicate well. They may not want to go out in public or try to use a phone. They don’t want people to feel sorry for them. They don’t want to make mistakes or have someone think they’re stupid.
It can take a lot of courage for someone with aphasia to go out in public and not care what other people think. Some people just go out there and do it! We try to show our families with aphasia that it’s not as bad as you think it is. Many people are kind, helpful, friendly and understanding. They make an effort at the communication circle.
But what can you do?
Where are all of these millions of people with aphasia?
If there aren’t any aphasia support groups or aphasia centers in your area (check at www.aphasia.org), one solution could be to find support online. The Aphasia Recovery Connection is an online support group that also does cruises and other activities.
Another source could be a university speech clinic in your area. Find out if your local university has a student training clinic and get in there.
Meeting people like yourself is a powerful feeling–you are suddenly not the only one like this, you can make new friends and talk about your story. One of my favorite parts of having an intensive program is that people come from all over and get to make new friends.
Whatever you decide to do, just make it happen!