Body
“Well, it could always have been worse. You’re lucky to be alive.”
That’s the kind of thing that people in wheelchairs frequently hear from well-meaning friends and family after they have experienced a traumatic spinal cord injury. Yet the effort to put a positive spin on a life-changing event often has unintended consequences: The person with paralysis often feels angry and dismissed.
That’s one finding from research conducted by the Center for Rehabilitation Outcomes Research (CROR) at the Shirley Ryan AbilityLab looking at common mental health concerns of people with traumatic spinal cord injuries (SCI). The findings of the study are published in the journal Rehabilitation Psychology.
During the pandemic, CROR researchers recruited 16 people in the Midwest and Atlantic Coast regions who met virtually for 90-minute focus group sessions. The average age of those participating was 48 and all of them had experienced their traumatic spinal cord injury more than a year earlier. The majority of them were white and most had attended college for some period. The sessions were moderated by CROR researchers who worked with a discussion guide developed with input from an Advisory Committee that included people with lived experience of SCI, rehabilitation clinicians and researchers and representatives from community advocacy groups. The goal of the study was to identify mental health issues among people with spinal cord injuries in community settings and the resources they found helpful in supporting their wellbeing.
One thing that came across strongly throughout the sessions was that the participants didn’t believe they had experienced mental illnesses per se but rather had dealt with mental challenges that they had faced and worked through.
To get the discussions going, the focus group moderator asked participants to describe their own mental health after their injury. They also were asked whether they had sought the services of a therapist or a psychologist to deal with mental health issues. Few had. Surprisingly, perhaps, the most predominant mental health issue that came up was anger and frustration rather than sadness or depression.
“They talked about their feelings of anger and frustration. Some were angry at themselves. Some were angry at other people because they felt pressure to put a positive spin on their situation,” says CROR associate director Linda Ehrlich-Jones, RN, PhD, who was the lead author on the resulting manuscript. “The anger often stemmed from the profound changes in their lives.” The thing that particularly rankled several participants was hearing that they were “blessed” because they were still alive.
The second most common issue participants talked about was their feelings of social isolation and loneliness. Some participants conceded that they self-isolated after returning home from the hospital while others said they felt lonely even if they were surrounded by other people. They frequently felt that people without a spinal cord injury couldn’t really understand what their lives were now like, which made them feel separate in a way they hadn’t before. “You’re still isolated even if you’re in a big group of people. They’re all just patting you on the head,” said one focus group participant. Added another: “It’s just easier to keep everyone away from it.”
Focus group members also talked about dealing with depressed moods, which were mostly associated with the physical pain they were experiencing as well as the mental challenge of coming to terms with their new reality. “The whole mindset was, ‘How can we fix me?’ said one participant. “That was really getting tiring and … exacerbating my depression because I was starting to realize, I don’t think that there’s any fixing this.”
The moderator also asked the participants about when their mental health challenges became most serious and if they had the resources in their communities to deal with those issues. The participants widely agreed that there was a mismatch between when they had access to mental health professionals, which was mostly during their inpatient hospital stays, and when they were dealing with feelings of anger, loneliness and depression, which mostly arose after they returned home.
Several noted that during the acute part of their treatment, there was so much to do and deal with in terms of medical treatment, pain management, and physical therapy that mental health concerns took a back seat. Others said they just weren’t ready at that point to talk about the future and their feelings about how their lives had irrevocably changed. “I think I was pushing people off in the hospital,” said one participant. Another talked about frustration after encounters with mental health professionals in the hospital setting: “They’re here to try to get me to accept this and I don’t want to accept this. And I didn’t know what else to talk about.”
One thing that numerous participants agreed really helped their mental health was peer mentoring by people who had experienced traumatic spinal cord injuries and gone on to rebuild their lives. Hearing that someone had gone back to work or was able to participate in sports or have children gave them hope. One participant who met with a peer mentor during the acute phase of their treatment said, “Talking to her was more helpful than almost anything that happened in rehab.” Participants also mentioned that social engagement in their communities helped them adjust to their new lives and maintain a positive mental outlook. Having supportive family and friends also played an important role.
Another thing participants agreed on was that it was harder to access mental health resources when they were back in their communities, often because of environmental barriers such as limited transportation. Those who lived in more rural areas or underserved urban communities also had fewer resources available to them.
Based on their analysis of the focus group transcripts, CROR researchers concluded that there is a pressing need for improved access to mental health services after people with a traumatic spinal cord injury leave the hospital. “It’s very important for rehabilitation and mental health professionals to follow up with patients after they return to their community settings, which is when many people are coming to terms with feelings of anger and isolation,” says Ehrlich-Jones. “It’s also clear we need more mental health providers with experience working with people with SCI in general but especially in outpatient and community settings.”