It's the first time since the stroke that your family with aphasia will be seeing friends or family. Your friends and family will mean well, but may be unsure of what to say or how to act. It can make any gathering awkward or stressful to let everyone figure it out for themselves. Since you probably didn't know what aphasia was before the stroke, chances are really high that no one else will either.
Discuss your specific situation with friends and family before you meet. You can say something to the effect of:
"Henry had a stroke that has damaged some of his brain. His understanding and expression have been affected. He's still the same person and he's still intelligent, but we have to do a little more work to help him communicate now". (While reading and writing are also affected, it won't play into socializing as much as understanding and speech).
Keep in mind:
- Many people are overwhelmed by another person's handicaps. They may need an adjustment period to understand.
- It may come off to you as insensitive or uncaring because you only see the action, not the intention.
- Assume that people have good intentions, then you can help bridge this gap in understanding.
- Many people will give you "advice". Deep down, most people's interactions with you and your loved one come from a place of caring and concern. We all feel helpless in these situations, so we try to find ways to "fix it".
- You may be criticized for how you're handling the stroke and rehabilitation, so you may second-guess every decision that you make. It's easy to stand on the outside of a situation and say "well, I would….", but it's not up to them. It's particularly galling to be criticized by a family member who otherwise contributes nothing to helping.
Find support through other families with aphasia, such as www.aphasiarc.org, or through an intensive program or rehab. It will help ease your mind and have more patience.
I suggest that you "reintroduce" friends or family members in smaller numbers, such as 1-2 people at a time. Have two friends over for dinner or watch the football game together—something that you used to do before the stroke. Educate them about the stroke and facilitate communication. Try not to take over all of the interactions—this makes your loved one look helpless and incapable.
It's easy to get angry and frustrated that no one understands aphasia, it happens to me, too. You can't expect the cable guy to care to be educated, most people are just trying to do their jobs with as little hassle as possible. The world is not going to change because your loved one has aphasia. However, you can educate your friends and family and change awareness and acceptance little-by-little. It will be worth it to give them a chance.
