By Tony Phillips
In a 2007 article in the Primary Care Companion to the Journal of Clinical Psychology, researchers Chaya Bhuvaneswar, Lucy Epstein, and Theodore Stern reported that patients facing amputation frequently experience the classic stages of grief described by Elisabeth Kubler-Ross, MD, in her 1969 book On Death and Dying.
The researchers write: “Among these stages are denial (often manifest as a refusal to engage in discussion or to ask basic questions about the planned procedure), anger (which may be directed toward the medical team, with expressions of being ‘cheated’ or ‘tricked’ into agreeing to an amputation), bargaining (by attempting to forestall the surgery or to delay it indefinitely for a myriad of reasons such as ‘I’m too tired; I don’t want to go through with any major surgery’), depression (taking the form of ‘learned helplessness,’ feelings of passivity, and being overwhelmed), and acceptance (which may not be reached until the patient is well into the rehabilitation process).”
The article further notes that anxiety, depression, sensitivity to self-image, rejection of help, and indifference to prospects for recovery are all common following limb loss.
Baylor Health Care System’s Jasmiry Bennett, DNP, RN, ACNP-BC, has confronted the full range of psychological effects on her patients before and after limb loss, and she says those effects are complicated by the lack of any standard mental health treatment protocol for limb loss. In a December 2016 article in the Journal of Vascular Nursing, Bennett notes, “There is no standardization of postoperative care instructions causing great confusion and increasing anxiety for both the patient and the caregivers. Individuals with limb amputation express increased depression and body image disturbance along with social embarrassment after amputation.”
Bennett says the grieving process for patients with limb loss is like the process following the loss of a loved one, and that it is frequently accompanied by regret, adding, “Patients often feel a loss of control and fear their prospects for life after amputation.” Bennett notes that the trend in healthcare to shorter inpatient stays means that patients are typically discharged from care in just a matter of days after surgery. “From the time they’re discharged, patients often have no connection to support for their mental health and help with their adjustment to real life.”
Regardless of other mental health resources that may or may not be available for any individual dealing with limb loss, support groups and amputee networks can play a vital role in healing psychological and emotional wounds.
Travis Ricks, Challenged Athletes Foundation’s associate director of programs and athlete relations, agrees that peer-to-peer connections are as important as anything in the recovery process. “I meet hundreds of amputees every year,” says Ricks, “many of whom are just beginning to get past the darkest part of their experience. Doctors, prosthetists, and therapists are important, but there are some things only another amputee can understand.”
Ricks, who lost his right leg to bone cancer as a teenager, has played with the U.S. national men’s sitting volleyball team and has competed in triathlons and a range of other sports. But he considers sports and activity just one part of a meaningful, fulfilling life. “Obviously, I’m passionate about fitness and participation in sports. I coach young people and I work to encourage all people, regardless of limitation, to live an active, healthy life. But in many cases, the biggest benefit of participating in group events is the sense of belonging, the comfort of realizing there are others who know what you’ve been through.”
Ricks says, “I’ve seen people come alive in a single day. It’s the smiles that stick with me. I love seeing people shift from fixation on what they’ve lost to enthusiasm for what’s still possible. That’s what a community of supporters with shared experience can do.”
The issues are very real. In addition to the anxiety, depression, grief, and rejection described in the medical literature, amputees can suffer from post-traumatic stress, anger, loss of self-esteem and confidence, abuse or dependence on pain medication, and much more. To address any of those issues, it is important to remember you’re not alone. As Ricks points out, it is equally important to focus less on loss than on possibility.
Torie Player of Belmont, Ontario, is a below-knee amputee who underwent multiple surgeries and other procedures in an attempt to salvage her leg following a farm accident when she was 18 years old. “I lived with limited function for 27 years,” she says. Ultimately, following a recurrent case of osteomyelitis, she had her leg removed midcalf at age 45. “I didn’t allow myself to dwell on the loss,” she says. “I was more interested in getting on with life and that meant focusing on the positive.”
In the six years since her amputation, Player has competed as an elite paratriathlete and enjoys backcountry hiking. “There’s so much in life to enjoy if you just get out and do it,” she says. “Whatever you can do today, you can do more tomorrow. But you have to find joy in it. You can’t get stuck in negativity.”
Player has volunteered as a mentor at Parkwood Hospital where she encourages new amputees to push themselves and shake off attitudes and ideas that hold back progress. “We get stares, and we might feel self-conscious,” she says. “I tell people when you see someone staring, smile back at them.”
Player agrees that camaraderie and connections with other amputees are a major part of successful recovery. “Limb loss is an opportunity to make new friendships, to conquer new hurdles, and to take on new challenges as part of a supportive community,” she says. She also notes that sometimes it is not just how the amputee feels about limb loss but the perceptions and opinions of others in the amputee’s life that can be a challenge.
“When I think back on my amputation,” she says, “I think it might have bothered my family more than me. My parents and my daughters were devastated. It was important to me that I get back to life and let them know it’s okay to feel happy for me.”
Support networks are important, but as Bennett and other medical specialists point out, professional counseling and intervention might also be indicated for many, if not most, amputees. “I often call on pastoral care services, social workers, and other staff to support my patients,” she says. “Without a standard mental health protocol, healthcare providers have to call on whatever resources are available. There are few scholarly sources that address the psychological aspects of limb loss before or after surgery. What studies there are suggest patients could benefit from psychiatric consultation pre-amputation and post-amputation. Ongoing counseling might also be indicated in some cases.”
For anyone struggling with the hidden psychological wounds of limb loss, it is vital that the struggle not be ignored. Limb loss, like many other physical events, can leave lasting inner scars that impede basic enjoyment of life and can even threaten a life. To demystify the experience and break negative emotional cycles, anyone fighting to overcome depression, grief, anxiety, regret, anger, stress, or any other issue should consider contacting a mental health professional. For now, while the medical community works with no established protocol, part of the work falls to the amputee and his or her friends and family.
“Reach out for help and find resources,” says Bennett. “There is hope and life after amputation.”
To demystify the experience and break negative emotional cycles, anyone fighting to overcome depression, grief, anxiety, regret, anger, stress, or any other issue should consider contacting a mental health professional.