Adjusting to Disability
Adjusting to a spinal cord injury or disability is a life-long process.
When you are first injured, adjustment focuses on dealing with the loss and learning all about the injury.
As you accept, learn, and master the new skills, you can incorporate them into daily life. This typically happens after discharge from acute inpatient rehabilitation and in the context of the “real world.”
The goals are to care for yourself in a manner that is as independent as your disability allows, and to begin the process of building a life that is not just focused around the disability.
In the beginning, this may involve:
- Learning what it means to be a spinal cord injury patient.
- Dealing with ever-changing emotional reactions.
- Doubting that you will become a productive person.
- Questioning if life is worth it any longer.
- Losing independence.
- Learning to care for yourself in the context of all the physical changes.
- Regaining independence.
After this initial adjustment period, you may be:
- Incorporating skills you've learned into daily life.
- Living day to day with a different level of independence.
- Re-establishing yourself in the family, at work, and in the community.
- Changing or adapting activities such as work, parenting, and leisure.
- Developing new interests.
Life-long adjustments may include:
- Living a meaningful life with the disability — a life that gives you a sense of purpose and accomplishment.
As you regain independence and integrate yourself back into the community, you can move beyond the disability and assume other aspects of living a meaningful and purposeful life.
Changing Roles
Depending on where you are in your life when the injury happens, you may need to adjust or drop life roles.
There typically is tension between your role and the roles that other individuals hold. You may view your role as a passive position where things are done to and for you.
You will need to develop ways to work, parent, and be an equal partner with your spouse or loved ones in a manner that is effective, productive, and meaningful. This can be difficult and require a great deal of re-working, especially when your spouse is also the person who will serve as your caregiver.
Changing roles may mean:
- Relationships with family and friends may be different.
- You may be seen as a patient and not a contributing member of your social network.
- You will need to reclaim your role or carve out a new role for yourself.
- You may be more dependent — physically, emotionally, financially — on someone.
- You may lose some former responsibilities and gain new ones. For example, you may not be able to mow the lawn, but you can fold the clothes.
Changing Needs
There may be specific mental health and cultural adjustment issues that you need to address. These can affect everyone involved in the recovery and adjustment process.
Mental health
- Depression and anxiety are normal reactions to the physical changes, as well as to the day-to-day consequences, of the injury and subsequent disability.
- Some people and their families benefit from medicine or counseling. Others do well with support from family and friends.
- Emotional reaction becomes an issue if it limits or prevents you from taking part in therapy and moving on with life.
- Some people with a history of drug and/or alcohol use may benefit from treatment.
Cultural adjustment
- How do you and your family make sense of the disability?
- How do you and your family members view other people with disabilities?
Disability may be a major part of your life, but it is not, and cannot be, the only part. Without other interests and activities, you can quickly become isolated.
You need to:
- See yourself as more than just one part.
- Fully engage in the world around you to be a full person.
- Live an active and meaningful life.
Depression and Psychosocial Issues
Emotional and behavioral problems may develop or worsen after a SCI.
- There is often a period of adjustment after a spinal cord injury.
- Sometimes feelings of sadness or anxiety may develop.
- In some cases, clinical depression may develop.
- Some people may benefit from psychological support after SCI. In many cases, medical treatment from a psychiatrist or use of anti-depressants may be indicated.
Your spinal cord professional can help determine what management is needed for any symptoms of depression.
Suicide Prevention
Reintegration and engaging in meaningful activity once discharged from the hospital is seen as the best way to prevent boredom, depression and suicide.
At times, depression may lead to suicidal thoughts. If at any time you have thoughts of hurting yourself, it is important to get immediate help.
- You can call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) 24 hours a day to be connected to a crisis center or trained counselor.
You are encouraged to discuss any thoughts of suicide with your health care provider. Some patients are referred to SCI psychology on an outpatient basis.
If indicated, patients and families can become connected to a community based behavioral health agency.
Chemical Use/Abuse and Dependency
Use of alcohol or drugs can have a negative impact on health and well-being after a spinal cord injury. Drug and Alcohol counseling may be an important step to becoming substance free.
Not only can alcohol and drug use increase risk of depression and suicide, but substance abuse can affect relationships. Use of drugs or alcohol may also worsen medical problems and may alter the affects of medications.
If you have both a spinal cord injury and a problem with either drugs or alcohol, you may benefit from behavioral health intervention. Your spinal cord professional can help direct you to a treatment program.
Spinal Cord Injury Peer Support Group
The spinal cord injury peer support group meets on the first and third Thursday of the month. The group meets at 4:30p.m. in the dining room of the UPMC Mercy Spinal Cord Injury Unit on the seventh floor of Building E.
