Spinal cord injury comes with a lot of challenges. For every individual who sustains a new injury there is a steep learning curve. Despite the education available there are still many common misconceptions to debunk. Life-altering effects including challenges to independence and mental health, health complications, not to mention systemic challenges like ableism and inaccessibility faced by people with SCI aren’t issues the public is really educated about. Society is often ignorant of the incredible resilience and impressive accomplishments of individuals with SCI too.
I asked the SCI community to share misconceptions about spinal cord injury that their own personal experience has dispelled. Read more to discover common misconceptions.
“Medical professionals are always educated about SCI.”
Unfortunately this isn’t the case. Many medical professionals lack comprehensive knowledge of SCI due to systemic gaps in medical education, the complexity of lifelong SCI care, and an inadequate healthcare infrastructure for chronic conditions. Outside of specialized SCI medicine, most medical school curricula do not provide comprehensive education on the lifelong management required for people with SCI.
Amber Davis, T7-8: “I was surprised to find out that it would become my job to be more educated about my injury than most medical professionals.”
As individuals living with SCI, we have to educate ourselves about our injuries and advocate for proper care from medical professionals. Being our own advocates can be exhausting when we feel misunderstood, unheard or dismissed. But sometimes self-advocacy is a full-time job.
“The mind no longer communicates with the body post SCI.”
While sensory and motor function are altered with SCI, the body still has methods for telling the brain what it needs. The phenomenon is known as autonomic dysreflexia and the symptoms aren’t fun, but if you learn to recognize them then you can eliminate their source. Autonomic dysreflexia makes the blood pressure rise, heart rate escalate, and triggers profuse sweating and/or chills. This is the body’s way of signaling to the brain that there is a disturbance below the level of injury. It could be a blocked catheter or constipation.
Ron Trozzi says living with SCI requires “interpreting the new way your body talks to you and understanding exactly what it’s saying”. He’s been a C5-6 for 48 years.
“Wheelchair accessible transportation is readily available to keep you active in the community.”
It’s not. Accessible rideshare options are scarce, transit limited and personal vehicles outrageously pricey.
“Transport is an exercise in complex project management- detailed advance planning with multitudes of backup plan Bs and Cs,” explains Ellinor Michelle, who has lived with spinal cord injury for several years.
“People with severe SCI cannot work or contribute.”
Many, many people with spinal cord injury have careers. Even individuals with high level and complete injuries often go back to work after sustaining an injury or find a new career.
Consider our law firm’s partners Kelley Simoneaux (T12) and Josh Basile (C4).
Other common misconceptions of note include lack of education around bowel and bladder dysfunction, pressure sore injury prevention and awareness, the body’s lack of thermoregulation, the price and poverty of paralysis, and the stress and resentment experienced by burnt out family caregivers.
Spinal cord injury is much more complicated than a loss of sensory and motor function. By educating ourselves and communicating with our community, we can round the learning curve. Call now to learn more.
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