by Alexandra Capellini

Several years ago, I found myself sitting in the doctor’s office staring at the wall, not sure of how to even begin the conversation. As an above-knee amputee, I was struggling with chronic lower back pain, some knee pain, and a sore and swollen ankle due to a fallen arch. The physical nature of these complaints was difficult to manage, but it was the emotional toll that hit the hardest. I felt weak, held back, stuck.

As I explained these frustrations to my doctor, I think he sensed my sadness. In an attempt to lift my spirits, he explained, “These are very common complaints. Your amputation is quite high. You’re doing so much with what you have.” At that moment, though, I didn’t want to hear that I was doing well for what I have. I wanted an action plan to be back at my prime. “We have some exercises we can get going for you,” he continued. But when I asked him how long and how often I would have to do these exercises until I felt better, he responded: “Take it easy. This will take time. Be patient with yourself.”

He had all the best intentions, but I still felt a gap in our conversation. It’s true, my physical complaints were somewhat predictable. I have a high above-knee amputation, higher than most others. I’m also an active medical student who stands for long periods of time. So of course there’s a toll to walking around all day with a high above-knee prosthesis! Yet I set a high standard for myself, and I didn’t want to settle for “doing so much with what I have.” I needed my one leg to be strong and pain-free so I could walk, swim, ski, rock climb, and do everything else I enjoy. The ongoing pain left me frustrated, confused, and doubting myself. My doctor’s happy talk didn’t help.

I realized then that my doctor and I weren’t going to connect if I couldn’t clearly articulate why this care plan mattered so much to me. How could I best convey this mix of feelings and articulate what I really wanted? From then on, I vowed to be more proactive—to be clear about my values and goals, and to insist on a plan that aligns with them.

It’s not a perfect formula, but it has completely changed how I approach conversations with my doctors. As amputees, we tend to interact more often with the healthcare system than our able-bodied peers do. Effective communication involves making sure you and your doctor each hear what the other says—and means. It is important to distinguish specific concerns that are new (more acute) from long-term challenges (more chronic). Are these concerns familiar to you? If so, what has helped in the past and what hasn’t helped? Be ready to share your experiences with your doctor. For lower-limb amputees experiencing flares of back or ankle pain, be prepared to share what seems to trigger these episodes, how you’ve handled them in the past, and what you’re hoping to do similarly or differently if another one occurs.

Physical medicine and rehabilitation (PM&R) doctors can help amputees identify areas of physical strength or weakness and make care plans to help us reach our goals. Our bodies often compensate for limb loss by overusing and/or underusing different muscle groups. It can take consistent stretching, strength training, conditioning, and gait and posture work to keep our bodies in shape. That’s an ongoing process that may require consistent modification and check-ins with your PM&R doctor. Your concerns and priorities will probably shift over time as well, but your practitioner won’t understand these changes unless you state them clearly.

This is why personal advocacy matters. In order for your care to align with your goals, you have to articulate your goals clearly to your doctors. Perhaps you want to walk in an upcoming 5K, and you need a plan that will help you get in the best shape for that. Or maybe you are interested in running that upcoming 5K, and you want a plan that avoids any increased risk of overuse injury. Maybe your focus is on maintaining your knee, since you recently began riding a bike. Or you started a new job that involves standing for longer periods of time, so you’re more interested in ways to improve your posture. If you’ve experienced a change in weight that warrants an updated prosthetic fit, you might want to discuss your overall goals for a weight that feels right for you.

PM&R doctors can help amputees identify areas of physical strength or weakness and make care plans to help us reach our goals. This can involve stretching or exercise regimens, physical therapy sessions, or mindful tips for maintaining appropriate gait and posture. These plans are important as we aim to take care of our bodies, so they can work their best for us.

This can sometimes feel more natural with PM&R doctors who work with amputees more frequently. During these visits, if your doctor’s care plan isn’t reaching the core of what’s important to you, advocate for yourself. You may consider saying, “I’m not sure we’re on the same page about why this concerns me and what my ultimate goal is here. I want to make sure we have a plan to get to where I want to be. Outcome ABC is important to me, and that’s why I’m so focused on using XYZ as a treatment strategy. I hope we can work together to get there.”

Above all, be clear about your values and let those lead every discussion with your doctor. Your values influence your goals, and your care plan should always strive to help you meet your goals. Advocate for yourself!

Alexandra Capellini is a medical student at the Icahn School of Medicine at Mount Sinai in New York City. For more of her articles in Amplitude, see:

What I Didn’t Learn About Disability in Medical School
The Unexpected Benefits of Social Distancing During Covid
For Younger Amputees, Actions Speak Louder Than Words