Limb Loss, Mental Health, and Accessibility

In recent years, we have grown accustomed to seeing lots of positive images of those with limb loss engaging with life. Thanks to developments in marketing technologies, the Paralympic movement, and social media, we are seeing active amputees portrayed like never before. And that’s a good thing.

While technology has definitely advanced over the years, the availability of these state-of-the-art prosthetic devices has not been enjoyed by all who might benefit from them. Roadblocks such as insurance, finances, access to providers utilizing the most up-to-date prosthetic knowledge, and availability of the most current information keep many people from receiving the best quality prosthetic care and leading optimal lives.

April is Limb Loss Awareness Month. Here are some facts:

• There are 2.1 million people living with limb loss in the USA, and that number is expected to double by 2050.
• 185,000 people have an amputation each year. This means that 300 to 500 amputations are performed every day.
• Around 30% of people with limb loss experience depression and/or anxiety.
• Lifetime health care costs for people with limb loss are $509,275 compared to $361,200 for people without limb loss.

Limb loss can affect physical and mental health for many reasons:

1. Pain. An ill-fitting prosthesis can be life-limiting and painful, and many who have suffered limb loss also have additional conditions that cause neuropathic or musculoskeletal pain. Unfortunately, limb loss represents only one of several morbidities with which the individual will need to contend. Other frequently encountered challenges include phantom-limb pain; pain within the residual limb; additional pain symptoms affecting the neck, shoulders, back, and sound-side limb; overuse syndromes; elevated anxiety rates and depression; and a compromised quality of life.
2. Access to care. Insurance companies regularly deny coverage for prosthetic devices. This is not a well-known fact in the general population, but it’s important to understand that insurance denials and financial burden are the largest barriers to optimizing quality of life for many folks with limb loss. People without insurance or financial means are often literally left without a leg to stand on. In addition, many of us travel to destinations to find a good prosthetist (who is an artist and engineer, really), when we discover that our local providers have not kept up with the most up-to-date advances or don’t accept our particular insurance coverage. These costs add up, and they’re cost-prohibitive for some.
3. Activity limitation and access to adaptive options. Levels and severity of limb loss vary widely. An above-knee amputation requires much more energy expenditure than a below-knee amputation, and bilateral amputation of both legs requires significantly more effort. While some upper extremity amputees choose not to wear prosthetic devices, adaptations are still needed. In the general population, adaptations are an afterthought. For example, unless we have a loved one who is a wheelchair user or we use one ourselves, it doesn’t occur to us that options to access activities don’t exist for some with mobility impairments outside of specialized programs. And, while special programs are wonderful and do exist, they are notoriously underfunded.
4. Expectations and setbacks. Most people with limb loss have multiple roles: Caregiver. Income generator. Family member. Tradesman. Friend. Neighbor. Athlete. Professional. Employee. Any one of these roles can become impacted by the changing expectations that limb loss entails. Life can be fast-paced, and folks with limb loss often need time for adjustments and adaptations. Setbacks are frustrating yet inevitable. We often worry that we will let others down. Frequently, people share they are concerned they’ll be perceived as a burden, despite the reassurances of friends, family, and colleagues. This is true of many people with disabilities.

But, you’re an inspiration!

Lots of amputees are told regularly that we are an “inspiration.” At the gym, on the street, or in the workplace, well-intentioned folks will make this comment as an intended compliment. While we all have different reactions to this sentiment, it can up the ante on our own self-expectations while undermining the real, shared challenges that we all face. Truth be told, I was more “disabled” before my amputation, as a limb-salvage patient, hobbling around on crutches and in a whole lot of pain. The world is full of inspirational people, most of whom have disabilities that are not seen! It is the paradigm that “disability” is an “other”-type-phenomenon that’s the problem.

In her book The Rejected Body, Susan Wendell describes the concept of disability as a social construct. She states: “In thinking about the social construction of disability we need to strike a balance between, on the one hand, thinking of a body's abilities and limitations as given by nature and/ or accident, as immutable and uncontrollable, and, on the other hand, thinking of them as so constructed by society and culture as to be controllable by human thought, will, and action. We need to acknowledge that social justice and cultural change can eliminate a great deal of disability while recognizing that there may be much suffering and limitation that they cannot fix.”

As the month of April comes to an end, let's remember that limb loss, mental health, and accessibility go hand in hand. The more open we are to learning about differences, the more adaptable we are to change, and the more understanding we are of people with differences of any kind, the happier we all will be—regardless of our abilities.