Any health care professional who works with people who have lost limbs recognizes that the psychological challenges their patients battle every day are tough. This is perhaps an understatement, since for most people, losing a limb profoundly impacts every aspect of their life mentally, emotionally, physically and spiritually. De-pending upon age, psychological health before the loss, financial situation, circumstances of the loss (trauma, disease or congenital), societys values and support or lack of support from family and friends, the road to recovery can be relatively quick or prolonged.
Most psychiatrists, psychologists and social workers who treat people who have lost a limb stress the importance of treating patients holistically. The totality of a patients life must be considered, e.g., work, family, gender, age, health and self-esteem. No two people will experience the processing of the natural feelings of grief, denial and anger at the same preconceived time or sequence, nor will the intensity of these feelings be identical. Some individuals never encounter certain feelings. While people who receive an amputation do tend to go through psychological stages, there is no standard pattern.
It is crucial that prosthetists and other rehabilitation professionals listen to their patients. Whether prosthetists realize it or not, they are much more than the person who made my leg.
As one 24-year-old woman named Robin who recently lost a leg due to a traumatic accident told O&P Business News, I owe my life to my prosthetist. They are not doctors; they are confidants. In many ways it is only through them that we can find some solace and peace. They are the ones with whom we share the most private and personal things. They must deal with that special position with care. It is not just a clinical thing, its a matter of the heart.
This article aims to assist prosthetists and rehabilitation professionals in better serving their patients by understanding some of the broad psychological implications of limb loss.
Elizabeth Kubler-Ross, MD, provided the five stages of grief that are well known to most mental health providers. They are:
- Denial and isolation: I cant believe this is happening.
- Anger: Why me? I cant stand this.
- Bargaining: If I do this, will I get well?
- Depression: Whats the use?
- Acceptance: Nothing I can do about it, may as well make the best of it.
Omal Bani Saberi, LCSW, CCHT, and transfemoral bilateral amputee, said that the cycle of grief does not flow easily.
Emotional recovery is the same as physical recovery; it is based on ones own timetable, she said.
A recent article in the Journal of Prosthetics and Orthotics by Deirdre Desmond, BA (Mod), and Malcolm MacLachlan, PhD, noted that depression, anxiety, hopelessness and suicidal ideation are common barriers to psychological adjustment and rehabilitation efforts. The authors stated that individuals who have suffered a traumatic injury often experience post-traumatic stress disorder (PTSD), and rates of clinical depression reported in outpatient settings range from 21 percent to 35 percent.
When I woke up from surgery, I felt an incredible sense of loss, said Jana, a young woman who lost her leg as a teenager due to cancer. It felt so awkward to be lopsided and I felt so unwhole and freaky. I wouldnt even look at my residual limb for several days, much less try and walk on the temporary leg.
A few weeks later, Jana said she realized shed never have two legs again, so shed have to make the best of things.
It was a big mind shift for me to say, Okay, Im a one-legged person, lets get on with life.
Support From Family and Friends
Spouses, family members and friends play a significant role in helping the amputee adjust to the disability. According to Kevin Carroll, MS, CP, FAAOP, family members who respond with empathy while at the same time maintain high levels of expectation, are the most helpful. An unhealthy situation, for example, is when family or friends offer to do too much for the patient.
Enabling the patient by saying, Oh, poor baby, you lost your leg. Let me do that for you, will only prolong recovery time, said Carroll.
Sometimes, family members can be frightened (Will he be able to support the family?), feel helpless (I dont know what to do that will help) or depressed (I dont know if I can cope). Spouses can especially feel overwhelmed with many conflicting emotions. Sometimes, a partner will feel so unable to manage that they leave. Communication of feelings is vital for the amputee as well as the spouse, family members and friends.
Ellen Winchell, PhD, said in her book Coping with Limb Loss that the amputee may feel guilty about the stress the family suffers because of the amputation. Physical limitations, changed roles within the family, medical bills and loss of work can precipitate tormenting feelings of self-blame in the amputee. Winchell suggested letting go of self-blame and other destructive feelings and focusing on facing new challenges.
Are You Listening to Your Patients?
For more than 10 years, I went to different prosthetists trying to find a socket that would fit well. For the most part, if it didnt feel good I was told I would get used to it. I spent way too much money on legs that fit poorly.
The great practitioners Ive worked with are imaginative, creating connections or components that dont exist. As a woman, I find it frustrating that I can only pick from two or three feet that are narrow enough to wear any normal sized footwear without needing Atilla the Hun to don the shoe.
I feel that some of the prosthetic businesses Ive been in were cold. Theres a cold tile floor with little décor and they just seem like a cold, lonely place. After all, you already feel like a lost soul out there being disabled and all. You need a warm atmosphere to go into. Help us feel warm, welcome and normal.
I have a good relationship with my prosthetist. The only gripes I have is that more attention should be given to the cosmetic side, and I hate the word stump.
My one plea is to get a leg that looks like a leg.
Angie, a 53-year-old woman who had a transfemoral amputation due to bone cancer, had a wonderfully supportive family.
My husband was scared and terribly upset, she said. He was so supportive though. He was there day and night for me. When I was in the worst pain he helped the nurses roll me over. When I cried, he cried. He treated me with total love and helped me do housework he had never done before.
Angie said her son was her biggest inspiration. He told her she could play football, swim or do anything she wanted with one leg.
Work and Play
Getting back to work as soon as possible after an amputation is essential for self-esteem and overall well being.
A person who goes back to work will recover a lot quicker than a person sitting at home, said Carroll.
Being productive is an inherent need in everyone, and the loss of work can be a terrible blow, especially to people who believe their work to be their identity. Some people cant physically manage their previous occupation and must change careers. If thats the case, vocational rehabilitation is an option. This too can be a source of grief, especially if the person loved the work. But it can also open up a new world of possibilities. According to Saberi, most people with a disability have a lot to prove to themselves, and the workplace is just another challenge.
This means the person has to self-advocate, she said. The individual needs to know his or her legal rights and have backup resources that will vouch for his or her ability to perform the job.
Jana found it hard to apply for jobs.
I was always honest and up-front about my disability and this seemed to frighten potential employers.
Everybody needs to play. Limb loss need not interfere with sports, hobbies or other recreational activities, said Winchell. The benefits of socializing, vigorous exercise and simple fun are innumerable. Involvement in recreational activities can enhance ones sense of competency by shifting the focus of disability to capability, said Winchell.
Body Image and Sexuality
For the most part, society maintains an absurdly narrow view of physical beauty, particularly for women. This can be especially difficult for an amputee because no matter what, societys standards of beauty can never be attained. A healthy self-image depends on several things level of self-worth, experiences, societys views and gender. It can be quite subjective.
In a 1996 issue of inMotion, Winchell said that how we feel about the way we look is more important to self-esteem than actual appearance.
An amputee sees himself or herself differently physically and sexually than a nondisabled person. People need to redefine what sexuality or sensuality is. Its mostly an uphill battle, since it goes against societys definition, Saberi said.
Everything has changed, said Robin, who is deeply grieving over the loss of her leg. I am now a completely different person, and I wasnt ready to not be who I was. I lived in short A-line mini skirts. My legs were me in the physical sense. They were my sexual expression. They were my self-confidence.
Robin said she couldnt look at her residual limb for quite a while and it took months before she could look at her body in a full-length mirror.
Complications from diabetes caused Stacey to lose her leg below-the-knee.
I was upset that my ideal image of motherhood was crushed, she said. I agonized over whether I would be able to share the experiences of skipping, jumping rope, riding bikes and running over hills with my kids.
Stacey also had trouble merging her ideal of femininity with the world of prosthetics with its bulky shapes, metal, plaster and bolts, nuts and screws.
Self Image and Age
Depending on the person, a prosthesis can either become an integral part of a positive self image or be seen as a hindrance. Desmond and MacLachlan wrote that a prosthesis may exemplify ability for one individual because it provides them with more function and freedom. The same device may be viewed as disability in someone else because it proscribes function and freedom. The authors state, Health professionals must be aware of the amputees relationship with their prosthesis as a physically and psychically invested aspect of the self
The age at which one receives an amputation plays a role in the recovery process. Desmond and MacLachlan note that for a young traumatic amputee, limb loss may represent the loss of life opportunities, whereas for an elderly person with peripheral vascular disorder, amputation may offer increased mobility, a decrease in pain, or both.
Hank, a 64-year-old who is scheduled to undergo an above-the-elbow amputation due to an injury said, I feel a lot of sadness, but Im also extremely happy its happening at age 64 instead of age 24.
Children and Limb Loss
Alice Kahle, PhD, a psychologist at the Childrens Hospital of Philadelphia, discussed the psychological and social implications of amputations for children.
O&P Business News: What makes one child basically accept the amputation and move on, and another child have extreme difficulty accepting the loss?
Kahle: Its typical to assume that adjustment to an amputation is kind of an all or none phenomenon kids are either completely adjusted or theyre completely maladjusted. From my clinical experience though, for most kids, adjustment to an amputation is not so cut and dry.
Research shows that the majority of children who experience amputation congenital or traumatic cope well with their impairments and show remarkably good psychosocial functioning. When I am working with parents of children with physical impairments, I always encourage them to think of adjustment as a process that is, and always will be, ongoing.
O&P Business News: What are the psychological stages children go through after limb loss?
Kahle: The first thing to consider is how the normal developmental stages and changes children typically pass through impact a childs adjustment to his or her amputation. For example, the natural inquisitiveness seen in many three -and four-year-olds may also be exhibited around the childs limb loss resulting in a period of how and why questions to parents about the amputation. As children mature and develop the cognitive abilities necessary to project into the future and appreciate the permanence of their limb loss, adjustment difficulties may crop up in a child who previously seemed to be taking things in stride.
O&P Business News: What are the general reactions of family members and significant others?
Kahle: Parents and family members go through an adjustment process, too. The first day of school can be an extra source of anxiety. They worry that their child will be teased or excluded. It is important for parents to remember they are setting an example for their child, especially when the child is young. At the same time, parents shouldnt deny their feelings. Talking to a counselor, friend or other parents who have been there can be incredibly reassuring.
O&P Business News: What psychological support is available for children?
Kahle: Research findings suggest that when a child with limb loss has a supportive social environment, especially perceived classmate support, it can serve as a protective factor in the psychological adjustment process. If a child is having difficulties, helping him or her develop social skills is important. When a mental health professional gets involved, its usually a matter of a normal child and family needing help dealing with an unusual situation rather than a need to address psychopathology per se.
O&P Business News: What issues are experienced in teens relating to body image?
Kahle: Concern about body image and fears of rejection may cause some teens to try to conceal their limb loss from peers. The disrupted body image may cause teens to be reluctant to pursue romantic interests. Alternately, teens may engage in promiscuous behaviors in the hopes of gaining acceptance.
O&P Business News: How can a prosthetist best help a child psychologically?
Kahle: Remember that any contact with the child and family has the potential to be therapeutic. Children with impairments often report that their concerns and worries are dismissed or discounted by adults, e.g., Youll be fine, Someday youll look back on this and laugh. Taking the time to listen to the childs feelings is a great way to start. Also, children with physical impairments tend to have higher self-esteem and lead more satisfying lives if they have as much functional independence as possible. Well-intentioned parents can sometimes be overly protective by doing too much for the child.
Prosthetists can help by gently confronting such situations. If a prosthetist observes a child exhibiting adjustment difficulties that are outside the range of what they typically see, encouraging the families to seek the guidance of a mental health professional is prudent.
For more information:
- Desmond D, MacLachlan M. Psychosocial issues in the field of prosthetics and orthotics. Journal of Prosthetics and Orthotics. 2002;14:19-21.
- Stress, Heart Health & Weight Management - The Stages of Grief. Accessed on May 13, 2002 from www.aomc.org/HOD2/general/stress-THE-3.html
- Winchell, E. Coping with Limb Loss. Garden City Park, NY: Avery Publishing Group;
- Winchell E. Your emotional well-being: body image, part II: Prosthesis wear is a matter of choice. Accessed on May 13, 2002 from www.amputee-coalition.org/inmotion/oct_nov_96/body_image_ii.html
- Amputee Coalition of America can be reached at (888) 267-5669, e-mail firstname.lastname@example.org or visit the Web site at www.amputee-coalition.org
- The Amputee Information Exchange can be reached at PO Box 10245, San Bernadino, CA 92423-0245, phone (909) 794-1179, e-mail: AIE@amp-info.org or visit the Web site at www.amp-info.org