My people: The brain injury society (Findings, part II)

“So my boyfriend’s pretty much the only one who gets it.  Unless you’ve had a brain injury, people don’t get it.  They can’t help it, but they just don’t.”

I nod as I listen to Sarah‟s story, knowing exactly what she means. Besides my family, who has seen me through my entire brain injury, I have few people who truly understand my trials in surviving and recovering from brain injury.

Though it’s difficult for my fellow brain injury survivors and me to receive the proper social support from individuals without brain injuries or support groups that don’t fit our needs, we still recognize that there’s something different about connecting with others who have had similar medical experiences.

Finding people who can comprehend and relate to the magnitude of our experiences is rare, and we value our relationships with those folks when we do find them.  For as many destructive accounts of social support I found in meeting with survivors, there was an equal number – 16 of 16 – with descriptions of encouraging experiences. These experiences seemed to occur from social support offered by other brain injury survivors or by individuals very close to us.

See? I said it would get better.

My people: The brain injury society (Findings, part II)

“You’ve just got to have those people in your life,” Douglas explains, again in his simple-as-that manner.

He tells me:

I know the hell people go through.  I’ve been there; I’ve even been suicidal.

“But at some point, you look at yourself and say, ‘Do I want to just give up, or do I want to survive?’ And that’s what having others who’ve been through the same thing is for… to understand all that good and all that bad… ‘Cause there’s a whole lotta bad.”

All the survivors I meet express a desire for a support group, but they say SBIF isn’t a group to which they can relate.

I think of Melanie’s story, noting again that survivors indicate age as an important factor in relating to others – as well as something largely missing from SBIF.

What helps you relate to others? Or what makes you want to share?

Groups tend to attract more members when the group has greater similarity and thus, a higher cohesiveness, meaning members are more likely to participate in group activities, benefit from the support, and stick around to support newcomers if they feel cohesive with one another (Stangor, 2013).

When group members share similar traits such as age, they find it easier to relate to one another and are more inclined to continue membership with the group.  Research also indicates that similar backgrounds (e.g., brain injuries) increase interpersonal attraction to a group and group cohesiveness (Stangor, 2013; Stillman, Gilovich, & Fujita, 2014), but this is not the case for my SBIF’s survivors and me.

My people: The brain injury society (Findings, part II)

When Melanie didn’t benefit from the support groups from SBIF, she sought other groups and went to great lengths in search of the proper support she needs.  When she couldn’t find people with brain injuries, experiences, or age similar to her own, she went online to find support groups that better suited her.

(No big surprise. That’s what we’re doing here.) But, she tells me:

I‟ve done art therapy for brain injury survivors.  I read their stories online, watch documentaries, and email with people who have suffered TBI.  I’ve never even met them, but they understand.

“As much as my friends and family try to understand and be supportive, on some level they still don’t get it because they haven’t been through it and they can’t relate. Hearing others speak about their injuries helps me understand mine better. I think it also gives me hope that I will continue to improve.”

When SBIF’s support groups didn’t suffice, Melanie continued her pursuit for social support. She’s thankful that the Internet has put her in touch with others who have similar experiences to her own and are also in the same phase of life.

“It helps to know that there are other women like me, who are my age, you know,” Melanie continues, “dealing with TBI while simultaneously managing everything else we experience at this age.”

My people: The brain injury society (Findings, part I)

“I call it the Brain Injury Society,” Douglas tells me, smiling as he explains his relationship with people who’ve also had brain injuries.

“I call it The Brotherhood,” I smile back.

Side note: Do you have a name for the people who get you?

              “They just get it better.  Simple as that,” he says.

Douglas’s “simple” explanation essentially does sum up survivors’ experiences as concisely as possible. The brain injury survivors I met shared stories of reaching out to others with brain injuries to be “reassured” and to “know that these things are normal.”

“My boyfriend has been with me through it all – the car accident, the hospital, everything,” Sarah tells me.

She sighs as she takes in the weight of that statement, knowing her own Brain Injury Society of support is very small.

Where’s the social support? (Findings, part V – seriously?)

I swear, I swear I’m almost done with this topic, but there are so many people’s stories to share! Have you shared your story in the comments yet?

Of course you haven’t! Do it now. ; )

Similar to Rachel’s experience, Melanie expresses her hard time relating to SBIF.  Melanie explains feeling like she wants to talk about her brain injury, except that SBIF is not the place to do it.

Melanie shares:

“The support group really isn’t for me.  I think it’s great what the Foundation is doing, but I’m so different from everyone else there. They have strokes and ABI, and even the people who‟ve had a TBI like me – well I’m just better off than they are. I can’t relate.”

Side note: Isn’t it interesting that so many people I met feel “better off” than other brain injury survivors they’ve met, and yet they still seek help, support, and comfort? Kind of crazy, just sayin’. End side note.

Though Melanie wants a place to talk about her experiences, SBIF’s participants and topics don’t apply to her specific situation.

And Douglas agrees with her.  Douglas attended two meetings before he decided not to go anymore.  “I’m doin’ better than the folks are there,” he tells me.

Douglas shares his narrative:

“I wanted to go and show my support for the other survivors, but that doesn’t really help me with what I need… And they’ve [at the support groups] had strokes, just like me.  You’d think we could relate, but we can’t. The people there have these woe-is-me attitudes. Sure, I’ve had my share of dark times too, but I’m more focused on how to live my life now, brain injury and all.”

I nod along as Douglas speaks and eventually concede that the population of SBIF is a bit older than we are. Douglas tells me how he’d love to have more people in his life who understand his situation.

He feels a strong need to share his story and connect with others. All of his friends, he says, “don’t understand it [brain injury] like they should.”

He tells me that his friends and family “just tell [him] to stop talking about it already.”

Douglas smirks.

“Oh, I talk about my injury all the time.  People tell me I talk about it too much, and I say, ‘Why don’t you have a brain injury and live to talk about it?’ I‟m never going to shut up.”