Strategies to Help People with TBI and Their Families Deal with Loneliness

Part of the loneliness comes from the fact that—a lot of people will say this, and I think it's probably true— you can't really understand it unless you've gone through it. And so, part of what we see is a lot of people feel lonely. Many people feel misunderstood, like nobody understands them. When you talk to people who have a brain injury, many people will tell you— 3 or 6 months later after their injury, after their discharge— they like to go in their room, and close the door, and they don't like to deal with anybody else. And that further make the feelings of loneliness—it makes them even worse. Part of it is—part of what we try to do with people is to help them be more willing to ask for help and help them communicate. There are some people—whether it's a person with an injury or a family member— they think "Well, if I talk about this, I'm going to get more upset." "It's going to make things worse." Some people think it's futile. "Nobody really cares about me so I'm not going to talk about it because people are just going to get tired of me." And so part of what we try to do with people is to help them understand that there are caring people out there— it could be their wife, it could be their mother, it could be their old friend— there are caring people out there and to pick a few people to talk to about their experience, and that will help them a bit with loneliness. One of the most painful things that I've seen happen is I've talked—I meet a lot of with families and sometimes the mother of a— let's say 18-year-old daughter—will come in with her daughter, and the mother will say "You know, my daughter has lost all of her friends." And, of course, you talk about loneliness—that's lonely, and people feel rejected. And I have mothers who say "The friends, they came around at the hospital bed they were there bedside and said if you ever need anything, just call on me." And then the person is discharged from the hospital 2 or 3 months later. They call their friends, they text their friends, and nobody replies. And the survivor's mother will say to me "This is happening; what do we do about it?" And it's really a difficult challenge because the person who has been injured, their whole life has changed. They're not going to school anymore, so they can't talk about their grades. They can't talk about their teachers. They can't talk about their plans for going to school next semester. The person who is injured, their entire life has changed, and what they've lost—in many cases— is the common ground that they shared with the friends they had before. The other thing is, many times when I ask a person with a brain injury what kind of help they need. They're not really sure. And so people who care about them often don't know what to do to make them feel better either. So, the friends who want to help—they get kind of uncomfortable because they're thinking "Well, I don't know what to do." "I don't understand what this person is going through." It's awkward. It's uncomfortable. And I think that contributes—in addition to the loss of common experience— I think that contributes to the person's feeling very islolated and alone. But what's not addressed—and this tends to be more important 6 months after discharge, 9 months, 12 months, 2 years— what's important is to acknowledge the emotional losses. And one of the emotional losses—and I think it contributes to the fact that more than half the people with brain injuries experience major depressive disorder within the 1st year of injury— part of it is because the medical community, they do their job well. But what's not addressed, which is really, really important is the person's emotional well being. And part of how we address that—it's pretty much a standard part of our interactions with families over time— is we try to define physical recovery—that's having your body work better, being more coordinated, having your balance be better, relieving your headaches. People really understand physical recovery, but for the programs that I work in— the clinical programs—part of what we try to help people understand is there is a really important part of themselves that has not been addressed, and that is their emotional well being. And one of the losses that is connected to their emotional well being is their loss of friends. And when I talk to people with brain injury and their families I will sometimes say that they probably—no one has probably ever talked to them about the loss of their friends. But the loss of friends and relationships may be—later on— it may be the most painful, difficult challenge that they face. And unfortunately until recently when we developed some therapies to help people understand what has caused them to lose their friends and develop some therapies to help them make friends until recently— the issue has been neglected.

People with a brain injury — and their families — often feel as if no one understands what they're going through. These feelings can be compounded by the change in or loss of friendships, but working with a therapist on communication skills and how to boost emotional well being can be beneficial.

Jeffrey Kreutzer

Jeffrey Kreutzer, PhD is the Rosa Schwarz Cifu Professor of Physical Medicine and Rehabilitation at Virginia Commonwealth University, Medical College of Virginia Campus, and professor of Neurosurgery and Psychiatry. He is director of Virginia's Traumatic Brain Injury Model System.

Posted on BrainLine July 30, 2012

Produced by Victoria Tilney McDonough, Justin Rhodes, and Ashley Gilleland, BrainLine.

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