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Like the song says, it can be true that "I Get By With A Little Help From My Friends." For people with spinal cord injuries, being connected to family and friends not only provides a group to socialize and have fun with, it can also provide a lifeline to the community, school and work opportunities, and other resources and activities that contribute to a satisfactory way of life. For many study participants, friends provide a motivation to engage in activities, such as Helen's friend Claudia, who is her "cruising buddy" for art classes and museum visits, or a "safe" destination, such as for Judy, who still works for the same employer as before her injury because her office has been made disabled-accessible.
Social support can literally be a life-saver when a loved one looks out for your health, such as when Odel's mother helps him with skin checks. Alma received her spinal cord injury at C-1 in a fall from a balance beam at age 5; because she was so young, Alma relied very much on her parents, who took shifts to stay with her throughout her rehabilitation, and took care of her until she was ready for full-time care attendants. Other study participants who have received quality care from family members include Rachel, whose mother discovered that she was being neglected by her care attendant, and Ken, whose mother is expert at noticing pressure ulcers at an early stage. "Significant others" can also provide valuable emotional support 1, such as Helen's boyfriend, who convinced her to become clean and sober, and Chris, who remains close friends with his ex-wife and is now involved in a new, strong dating relationship. In fact, studies show that people with strong social support, whether it is from partners, friends or family, are more successful at following their doctors' orders and at doing things that keep them healthy, such as eating right, exercising, using techniques to prevent pressure ulcers (which means the same thing as "pressure sores" or "bedsores"), and stopping smoking and recreational drug and alcohol use 2 3. And, to take it one step further, research also shows that people with spinal cord injury who follow this kind of healthy lifestyle are much less likely to develop a pressure ulcer 5 or more years after their injury than people whose lifestyle habits are not as healthy 4.
It is very common for people with spinal cord injury to deal with feelings of depression at some point. In fact, a study in 1999 5 found that almost a third of people living with spinal cord injuries reported symptoms of depression, and almost 60% of the participants in our study reported feeling depressed at one time or another since their injury occurred. But a number of studies have shown time and again that people with spinal cord injuries who feel they have a great deal of social support report they are much more satisfied with their lives, and experience much less depression, than people who don't call on those around them for support 6. For example, our study participant Ken relied on friends with and without spinal cord injuries, youth pastors, a young doctor, fellow members of his congregation, "phone pals" and his mother to inspire him to keep a good attitude and take good care of himself.
There are times when friends or family can create a negative situation, such as when disruptive visits from Gary's friends led to his being kicked out of a series of convalescent homes. Gary "couch-surfed" (slept on the couch) at their homes, which saved him from becoming homeless, but the chaos, that is, total disorder and confusion, of that lifestyle contributed to developing a pressure ulcer. When she was 27, Helen's all-night partying with her friends resulted in a pressure ulcer on her bottom that a friend described to her as being the size of an egg! Adjusting to a spinal cord injury means changes, and modifying some past behaviors might help prevent problems, such as pressure ulcers or urinary tract infections, that go along with this new way of life. Making your friends and family part of that effort by asking them to help you avoid possible dangers might be a little hard, but it might also give them a way to feel like they are really doing you some good.
It is important to keep in mind that helping to provide care to a family member who is ill, no matter what the diagnosis, can sometimes be stressful. Emotions like guilt or sadness can naturally arise, simply because of the circumstances of seeing a loved one who is experiencing difficulties 7 8. Encouraging a friend or family member who is stressed to seek out their own care provider, such as a therapist, counselor, clergy or support group, can help them to become reenergized by having a outlet for what they're feeling, and also show that person that you care as much about their well-being as they do about yours.
Another source of social support might be available to you through the Internet. There are literally thousands of chat rooms and places to read and post messages to other people across the country and across the world, often focused on a particular topic, like sharing opinions about movies or current events. There are also quite a large number of chat rooms and message boards whose theme is discussion by people who have a spinal cord injury, or who are friends and family of a person with a spinal cord injury. The 'forums' page at SCI-Info-Pages has links to online chat rooms and message boards on the SCI-Info-Pages website, which is maintained by a person with a spinal cord injury at C-5/C-6.
Websites that have more general information on social support include one about Family & Relationships, on the Spinal Cord Injury Model System, maintained by the University of Alabama at Birmingham, which has a list of topics you can click on to read more about aspects of support including parenting, sexual relationships, and alternative lifestyles. And Quality of Life: What's Important, on the website of Craig Hospital in Denver, Colorado, talks about what goes in to having a high quality of life, that is, what makes life enjoyable, and finds that social relationships, whether with friends or family, rank very high on the list. If you are interested in a more scholarly article, try "Family and Spinal Cord Injury", by Dr. Wise Young of Rutgers University; Dr. Young discusses how the condition impacts a person's bonds with parents, children and significant others.
Whether you gather around you your family and the friends you have had for years, or whether you create a new circle of family, new friends with or without spinal cord injuries and caring health care professionals you have met in the time since your injury, what is important is that you know that you are not alone. Social support is an important part of feeling good about yourself, and of taking care of your health!
4 (2004). Patterns of recurrent pressure ulcers after spinal cord injury: Identification of risk and protective factors 5 or more years after onset. Archives of Physical Medicine and Rehabilitation, 85, 1257-1264.