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What are the most difficult psychological obstacles for patients to overcome after spinal cord injury?
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One of the things that I see of often is this idea of identity redevelopment. People conceptualize themselves prior to injury based upon all these different roles we have in our society and our families. A lot of it is based on productivity. So what happens after an injury is that there might be some sort of threat to the perception of who I am, especially in our culture of being very productive individuals. So I see people have challenges with their response to injury when they feel like their identity has changed, or that their role in their different social systems has changed. So it’s about addressing who they are, and how they integrate, who I was before, and who I am now and what this productivity look likes now—how can I still fulfill those various roles?
Their own expectations. I mean that the more that we’re caught up in, “A person needs to be this way,” or “This is the only way to interact,” or that “Life is over with a wheelchair; better dead than disabled.” If they can’t escape that, they’re not going to know what’s possible; they’re not going to question it. And, I guess that’s why seeing peers, seeing other people doing stuff is like, “Oh, I can do that too—well, what makes them so special, it’s not impossible.”
There is a small subset—it’s a significant subset of individuals who deal with depression. And I would say that the issues around depression have to do with how I interpret this life experience. Am I interpreting it in a very negative way such that I only see it associated with losses versus my willingness? And the ability to think beyond that -- and move beyond the fact that -- there have been some changes; there have been some losses. But what are my goals, and how do I get there? It’s often times moving beyond that initial sense of profound loss to keeping my eye on the goal. What is it I want to do, and how do I accomplish that?
A spinal cord injury presents a person, a family and everybody who loves those people with innumerable losses. Loss of control over one’s day-to-day functions, loss of body image, loss of ideas about the track that you are on in life, the trajectory, the expectations. And loss is particularly painful emotion, and I think if you had to boil it down, loss is the biggest struggle that I think most people deal with around spinal cord injury.
The anger is a kind of a depressed anger, the anger of, “Why did this happen to me? What could I have done to deserve this particular fate?” Just getting them to deal with that anger, express that anger is probably the first step in actually getting them to cope.
Themselves and their fears. I think that it’s important for families and patients to have congruent paths and ideas. I’ve seen difficulties when families are on one side of the fence and the patient is on the other. Sometimes patients accommodate, tolerate much more quickly than family. Family can say, in a way that’s well intentioned but misdirected, that “If you just believed in God more or you worked harder, then you would run out of this rehab hospital.” It’s not always the case and that can cause a lot of conflict for the patient.
"The most difficult psychological obstacles for SCI patients really include depression. Basically pain and depression can really impact each other, so if you're depressed and you've been depressed before your injury, it's going to make it even more challenging. It's going to be more challenging to accept where you are, to have good self-esteem, to have a positive outlook, definitely those things. I think one of the big things that is really important is having a positive outlook, and how crazy is that right, "Here I've had a spinal cord injury, how can I be positive?" But we know that negativity, being overly negative, being overly depressed is going to make it harder on your body, harder on you. Many people with spinal cord injury are depressed, but not all of them. So we have some people with spinal cord injury who are very happy and we see those individuals doing much better in their rehab versus those who are depressed. So if we can identify and treat depression and make sure you're getting the help for the depression that you need, then you're likely to do much better throughout your rehab and functioning."
Heather Taylor, PhD
Psychologist/Director of Spinal Cord Injury and Disability Services, TIRR Memorial Hermann - Houston
Heather Taylor is the Director for Spinal Cord Injury and Disability Research (SCIDR) at TIRR Memorial Hermann. She is Associate Professor in Pediatrics and Physical Medicine and Rehabilitation (PM&R) at the University of Texas Health Science Center in Houston. She is also Adjunct Associate Professor in PM&R at Baylor College of Medicine and previously served as Associate Research Director for the Center for Research on Women with Disabilities (CROWD). She has focused much of her work on women and children with physical disabilities, and has expertise in spinal disorders related to spinal cord injury and spina bifida.