Created 09/2021
Introduction
Losing a limb is a life-changing experience. This process often affects nearly every aspect of an individual’s life ranging from work and play to friends and family. People respond differently to the loss of a limb. How an individual responds might relate to one or more of the following factors:
- Factors associated with the limb loss: Was it congenital, traumatic, or disease related? What is the level of amputation?
- Individual characteristics: What is your age or health status? How will this affect you financially?
- Personality traits: How have you coped with difficult situations before? What is your attitude about your health? Do you feel a sense of control despite the loss?
- Physical and social environment: Do you have a support system in place? Are the services you need appropriate and accessible? What are your living arrangements, and how might they be modified to accommodate your limb loss?
Recovery is an ongoing process. Although several phases typically occur on the road to recovery, it is difficult to predict when each stage will occur and in what order. Each phase of recovery has special challenges and requires different coping strategies.
Through working with individuals with limb loss or limb difference as well as consulting appropriate evidence-based literature, the Amputee Coalition has developed a model for recovery that is specific to our community which is presented below.1,2,3 Just as the stages of grief are fluid, the stages of recovery are as well. These models are less driving instructions in which a new amputee crosses off the steps they have completed, and more like a map with major landmarks that can help a new amputee orient themselves in a process that so many have gone through before.
| Phase | Characteristic | Description |
|---|---|---|
| Enduring | Surviving surgery and pain | Physical anguish: hanging on; focusing on present to get through the pain; blocking out distress about future-it is a conscious choice not to deal with the full meaning of the loss; self-protection; may refuse a peer visit. |
| Suffering | Questioning; Why me? How will I...? | Emotional anguish: intense feelings about the loss: fear, denial, anger, depression; vulnerable and confused; return to Enduring stage; emotional anguish about the loss of self adds to the pain. |
| Reckoning | Becoming aware of the new reality | Changing roles: coming to terms with the extent of the loss; accepting what is left after the loss; implications of the loss for the future-how will roles change; ongoing process; minimizing one's own losses in comparison to other's losses. |
| Reconciling | Putting the loss in perspective | Regaining control: increased awareness of one's strengths and uniqueness; more assertive; taking control of one's life; self-management of illness and recover; changed body image; need for intimacy. |
| Normalizing | Reordering priorities | Regaining balance: establishing and maintaining new routines; once again, doing things that matter; allowing priorities other than the loss to dominate; advocating for self. |
| Thriving | Living life to the fullest | Being more than before; trusting self and others; being a role model to others; this level of recovery is not attained by everyone. |
Sometimes the road to recovery is bumpy and filled with detours, and you might experience a range of emotions. Research has found that the common types of emotional concerns after the loss of a limb are depression, anxiety, grief, and trauma.4, 5 The following describes some of the emotional and well-being issues that could occur after an amputation, as described by the American Psychiatric Association:6
- Post-Traumatic Stress Disorder (PTSD): PTSD can occur in anyone who experiences a traumatic event, especially if that event was life-threatening such as a military injury or car accident. The symptoms can range from reliving the event (flashbacks), to overall emotional numbness. Other symptoms include anxiety, exaggerated startle reactions, nightmares, insomnia, and extreme avoidance of reminders of the trauma. Someone may also experience dissociative features. Dissociative symptoms can include not knowing where you are, forgetting important parts of the traumatic event, or feeling as if you are outside of your body. A combination of these symptoms that occur six months after the traumatic event may be PTSD.6
- Acute Stress Disorder (ASD): The symptoms that define ASD greatly overlap with those for PTSD, with the major difference being the time since the traumatic incident. ASD can occur in the first month following a traumatic event. ASD symptoms continue for more than a month past the traumatic event, an assessment for PTSD may be appropriate.6
- Depression: There are many types of depression disorders, and most are marked by feelings of sadness and/or loss of interest in activities once enjoyed. It can lead to a variety of emotional and physical problems and can decrease a person’s ability to function at work and at home. Symptoms can vary from mild or severe.6
- Generalized Anxiety Disorder (GAD): GAD is characterized by chronic worry and irritability in multiple areas of life that seem to have no cause for at least 6 months. The worry is more intense than the current situation warrants. Restlessness, insomnia, difficultly concentrating, fatigue, and muscle tension are other symptoms.6 GAD can occur during any phase of recovery from limb loss.
- Grief: Grief is a strong, sometimes overwhelming emotion for people and a natural reaction to loss. Everyone experiences grief differently, and it will be influenced by the nature of the loss. Feelings of grief and loss are common after an amputation. There are five common stages of grief that can occur in any order and last for any amount of time.2 They include:
- Denial and isolation: A conscious or unconscious decision to refuse to admit that something is true.
- Anger: An emotional or physical act in which a person attempts to place blame.
- Bargaining: A process in which a person attempts to postpone or distance themselves from the reality of a situation.
- Depression: A feeling of loss of control or hopelessness.
- Acceptance and hope: A feeling of stability or resignation as a person becomes an active participant in their life.2
Everyone’s emotional recovery will look different after the loss of a limb. The important thing to remember is that you are not alone on this journey. Below are some tools and resources that may be able to assist you along the way.
Amputee Coalition Peer Support Programs
Whether you, a family member, or a friend is facing an amputation or has been impacted by limb loss or limb difference, the Amputee Coalition offers several ways to find useful information, support, and encouragement when it is needed most.
- Certified Peer Visitor Program
Often, no one is in a better position to understand about living life with an amputation — or supporting a person with limb loss or limb difference — than someone who has been there. The Certified Peer Visitor Program can match you, your family, and your caregiver with an experienced and well-trained peer who can offer encouragement and information from a place, and at a pace, that an individual in this circumstance can better absorb. To be connected with one of our Certified Peer Visitors, you can fill out the online form or contact the National Limb Loss Resource Center at 888-267-5669, option 1 to start this process. - Support Group Network
Support groups that serve the limb loss and limb difference community provide a safe and supportive environment for individuals living with limb loss or limb difference as well as their family members and caregivers. The Amputee Coalition has over 400 registered support groups across the country. To see if there is a support group near you, please use this map or contact the National Limb Loss Resource Center at 888-267-5669, option 1. You can also visit our online calendar to learn more about support group meeting locations and times. - Amputee Coalition Support App
The Amputee Coalition Support App is a free resource and was designed for those living with limb loss or limb difference and their families and caregivers. The app embodies the power of connection to peer support and valuable resources, is HIPAA-compliant, and available via Apple App Store , Google Play, and web browser link: https://cpvapp.amputee-coalition.org. For Support App questions and technical assistance, please email the Amputee Coalition Peer Support Team at peersupport@amputee-coalition.org.
Improving Well-Being Program
The Amputee Coalition developed the Improving Well-Being Program in collaboration with researchers at Johns Hopkins University School of Medicine. The original goal was to assist prosthetists in engaging their patients regarding their mental health and well-being. This program has grown into a tool that is also available to the general public. The Improving Well-Being Program has a self-directed assessment tool that uses clinically validated instruments to assess your depressive symptoms, satisfaction with life, and rehabilitation goals. Once you go through the assessments, the program will give you a Distress score and your Life Satisfaction score with explanations of each of those. After receiving your score, you can search for national, state-based, and local resources to help you meet your well-being goals. While the Amputee Coalition cannot make a direct referral to a mental health provider, we do provide tools to aid you in your search for one. The resources in the Improving Well-Being Program centers around the holistic approach to mental health and well-being so there are numerous resources that can potentially help improve your mental well-being and feel supported and connected.
Promoting Amputee Life Skills (PALS)
Promoting Amputee Life Skills (PALS) is a free program aimed to develop skills to improve the quality of life for individuals with limb loss or limb difference. The program consists of several modules that will help you use the skills you already have and develop new tools to manage life after limb loss. Some topics of the modules include self-management, health and wellness, as well as the self-regulation of different emotional states. PALS was developed in collaboration with Johns Hopkins and the University of Washington.
Find Mental Health Support in Your Community
Along with the Amputee Coalition’s programs listed above, there are resources available to aid you in finding help with your mental well-being.
- Locate a therapist in your community that fits your payment and symptom needs. com is one of the mostly widely used, free, online resources to find local mental health support in your area.
- Contact your local NAMI Affiliate for resources and programs in your
- Mental health resources are available from the NAMI HelpLine Monday-Friday between 10 a.m. and 6 p.m.
- Non-crisis, emotional, and preventive care support is offered over the phone through the Warmline Directory.
If you need immediate support:
- Crisis Text Line: Text “HOME” to 741741 to be connected with a trained crisis counselor.
- National Alliance on Mental Illness (NAMI) HelpLine: The NAMI HelpLine is a free, nationwide peer-support service providing information, resource referrals, and support to people living with a mental health condition, their family members and caregivers, mental health providers, and the public.
- 800-950-6264
- National Suicide Prevention Lifeline: If you or someone you know is in crisis — whether or not they are considering suicide — please call to speak with a trained crisis counselor 24/7.
- 800-273-8255
- SAMHSA Disaster Distress Helpline: Call the toll-free number to be connected to crisis counseling and support for people experiencing emotional distress related to natural or human-caused disasters.
- 800-985-5990
- The Trevor Project Resources: Text “START” to 678678, instant message a counselor on their website, or call the number listed below 24/7. The Trevor Project is a national organization that offers support, including suicide prevention, for LGBTQ+ youth and their
- 866-488-7386
- Trans Lifeline: Call to be connected to this trans-led organization that connects trans individuals to support, community, and a variety of
- 877-565-8860
- Veterans Crisis Line: Connect with the Veterans Crisis Line to reach qualified responders with the Department of Veterans Affairs.
- 800-273-8255, option 1
References
- Roy, M. J., & Francis, J. L. (2011). The psychological recovery of physically wounded service members.
- Spiess, K. E., McLemore, A., Zinyemba, P., Ortiz, N., & Meyr, A. J. (2014). Application of the five stages of grief to diabetic limb loss and amputation. The journal of foot and ankle surgery, 53(6), 735-739.
- Bradway, J. K., Malone, J. M., Racy, J., Leal, J. M., & Poole, J. (1984). Psychological adaptation to amputation: an overview. Orthotics and prosthetics, 38(3), 46-50.
- Singh, R., Hunter, J., & Philip, A. (2007). The rapid resolution of depression and anxiety symptoms after lower limb amputation. Clinical rehabilitation, 21(8), 754-759.
- Pomares, G., Coudane, H., Dap, F., & Dautel, G. (2020). Psychological effects of traumatic upper limb amputations. Orthopaedics & Traumatology: Surgery & Research.
- American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-5®). American Psychiatric Pub.
For print requests, please contact:
Amputee Coalition
601 Pennsylvania Ave, Suite 600, Washington, DC 20004
888/267-5669
amputee-coalition.org.
Suggested AMA format citation for this material:
Amputee Coalition. Emotional Recovery Fact Sheet. https://www.amputee-coalition.org/. Published September 2021. Accessed [date].
It is not the intention of the Amputee Coalition to provide specific medical or legal advice but rather to provide consumers with information to better understand their health and healthcare issues. The Amputee Coalition does not endorse any specific treatment, technology, company, service or device. Consumers are urged to consult with their healthcare providers for specific medical advice or before making any purchasing decisions involving their care.
This project was supported, in part, by grant number 90LLRC0001-04-00, from the Administration for Community Living, U.S. Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.
© Amputee Coalition. Local reproduction for use by Amputee Coalition constituents is permitted as long as this copyright information is included. Organizations or individuals wishing to reprint this article in other publications, including other World Wide Web sites must contact the Amputee Coalition for permission to do so.