Psychosocial Issues

Adjusting to disability

Adjusting to a spinal cord injury or disability is a life-long process.

When someone is first injured, adjustment focuses on dealing with the loss and learning all about the injury. As the patient accepts, learns, and masters the new skills, the patient incorporates them into daily life. This typically happens after discharge from acute rehabilitation and in the context of the “real world.” The goal is to care for oneself in a manner that is as independent as the 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 oneself in the context of all the physical changes
• regaining independence

After the initial adjustment, the patient may be:

• incorporating what has been learned into daily life
• living day to day with a different level of independence
• re-establishing oneself in the family, at work, and in the community
• changing or adapting activities such as work, parentiong 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 patients regains independence and integrate themselves back into the community, they can move beyond the disability and assume other aspects of living a meaningful and purposeful life.

Changing roles

Depending on where an individual is in his or her life when the injury happens, life roles may need to be adapted or dropped. There typically is tension between the role that the patient has and the roles that other individuals hold. Patients may view their role as a passive position in which things are done to and for them. They will need to develop ways to work, parent, and be an equal partner with their spouse in a manner that is effect, productive, and meaningful. This can be difficult and require a great deal of re-working when the partner/spouse is also the person who will serve as the care-giver.

Changing roles may mean:

• Relationships with family and friends will change.
• 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 on someone than you ever were.
• Responsibilities may be lost and new ones gained. For example, you may not be able to mow the lawn, but you can fold the clothes.
• You may be financially dependent on someone.

Changing needs

There may be specific mental health and cultural adjustment issues to be addressed. 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 to the injury and subsequent disability.
• Some patients and or their families benefit from medication or counseling. Others do well with support from family and friends.
• Emotional reaction becomes an issue if it limits or prevents a patient from taking part in therapy and moving on with life.
• Some patients present with a history of drug and/or alcohol use. They benefit from treatment for that abuse.

Cultural adjustment:

• How do the individual and family make sense of the disability?
• How are people with disabilities viewed by the patient and the family?
• Are the family, the extended family, and the community a resource for help or a force of isolation?

Disability may be a major part of the patient’s life, but it is not and cannot be the only part. Without other interest and activities, the patient can quickly become isolated. Individuals need to see themselves as more than just one part. They need to fully engage in the world around them to be a full person and live an active and meaningful life.