In what ways can peer mentors be helpful after a spinal cord injury?

Peer support can be extremely helpful. I think as a person with a spinal cord injury being able to reach out to someone else who’s been there and knows what it’s like, who’s a little bit further in their rehab than you are, and can say, “Yes, this is what I’ve done. Yes, this is normal. That’s how I felt, I was angry. I tried this service, I tried this therapy.” It’s huge; I highly recommend reaching out to multiple others, if you will, other individuals with spinal cord injury. You may have someone whose like, “Well this is my rehab partner, they’ll tell me what I need to know about the rehab,” or “this is my physician advocate partner, and they’ll tell me how to ask my questions and get what I need done. And then I’ll have those who are my emotional partner, who will share with me my frustrations about going through this, and my anger, and get my irritation with barriers in the community and everything like that.” So having multiple individuals—it doesn’t have to be just one—there’re people that meet different needs.

In fact in almost any of the medical conditions that involve psychological, psycho-social improvement, that’s critical in terms of learning from people who have gone through what you’ve gone through, or similar, or that they know someone. I have a person who I spoke to on the phone after discharge last week, and that person told me that a person who had a spinal cord injury 15 years ago, was telling him all the things that the team had mentioned -- to expect it was real. So when he spoke of getting on a plane and on how you really have to prepare for that, he heard that before but now it was in reality. And it made that difference, he got it and he said, “I’m ready to maybe do that in the next year.”

I specialize in working with veterans. So there’s that instant connection of being a veteran and there’s that instant connection of “You’ve gone through this before, you get what I’m talking about.” There’s this extra level of credibility, and it’s also not as threatening to have someone come in and say, “Hey, how’s your day going?” There’s no other agenda, they just want to know how you’re doing, they’re not gathering clinical information, and it’s a time to meet somebody new and tell them where you’re at. And go from there with no expectations other than support.

It can be helpful in just helping an individual who has recently been injured to learn from other individuals, especially those who’ve been injured longer than they are, to know how to expect and overcome obstacles.

Peer support to me is important if the peer is not trying to impose their thoughts, their reactions to their injury on another. I think they’re there as guides, but not coercive guides.

It can be fantastic if the peer is trained. You just can’t pull someone off the street with a spinal cord injury and say, “Talk with them! ” You want to know their background; you want to make sure that they’re comfortable.  Also realize that their story is their story, but they know some of the commonalities and how to connect. There’s nothing better than having someone who’s lived it, who’s done it say “It’s possible, if I can do it so can you,” and to provide some specific encouragement.  And you have to realize that usually peers are not trained to recognize depression, suicidality, serious problems.

I think peer support is really a crucial piece of the rehab process early on. Professionals within the rehab world can provide lots of education about how things happen and how to do certain things. But I don’t think there’s any replacement for somebody who knows what it’s really like, who’s living it, who has validity from the person that they're speaking with in terms of this person truly knows where I’m coming from. And lots of times I think patients and/or families will be more open with -- or talk about different concerns with a peer mentor than they might with a professional psychologist, or physical therapist or a nurse.

I think it’s very helpful if an individual can have some form of peer mentoring where they can have an opportunity to talk somebody one-on-one, who may have experienced very similar experiences and some of their own fears. The challenge can be sometimes finding somebody with a similar injury because that’s what I hear from folks—“I want to talk to somebody who’s had my exact injury and at my exact age.” It can be kind of challenging to find someone, but we all have to be open to the fact that we have some shared common experiences. It may not be the exact same situation, but you’d be surprised what you can hear from those shared experiences. Why not see if you gain something, even if that person doesn’t seem to be exactly like you, but it sure is helpful to talk to somebody one-on-one who has shared experiences.