When I asked people what they love about living with limb loss, I got some thoughtful responses. But when I asked what they hate about it, something amazing happened.
By Angelina Martinson
If you follow me on social media, you know I tend to lean toward the positive side of everything. Through my organization (Adaptive Amputees) and my posts on Facebook and Instagram, I try to encourage and empower amputees. I post about daily life, physical fitness, mental health, travel, relationships, and more. My intent is to equip people with the ideas and the confidence to live their best lives.
To understand what my followers have on their minds, I routinely pose questions about various aspects of living with limb loss. Last fall, I posted two separate questions and was blown away by the responses. The questions were simple:
- What is your favorite part of amputee life?
- What do you hate about life as an amputee?
Once the comments started rolling in, the contrast between the two threads immediately leaped out at me. The first question brought out responses that described gratitude, new opportunities, and a measure of pride. They resonated with me, but the number of comments stayed manageable.
The answers to the second question were different, both in volume and intensity. Honestly, I felt myself tighten up as I hit “post” on that question. I dreaded the flood of negativity I expected to read, and I worried that it might alienate some of my audience. But I think it’s important to keep my feeds realistic and provide a safe space for people to feel seen and heard. So I raised the question and braced for the response.
Knives Out
As I anticipated, the knives came out. People didn’t hold back in describing what they hate about amputee life. What I didn’t expect was how the discussion sparked connection instead of conflict. It was as if I had created a spontaneous support group. The comment section turned into a fast-moving conversation, with amputees jumping in to say, “Yes, this!” or “I thought I was the only one,” or “Message me, I deal with this too.” Dozens of replies stacked under individual comments. People tagged friends. They shared frustrations they clearly didn’t get to discuss in their daily lives offline, and they offered encouragement or tips to help each other.
And the themes were strikingly consistent. No matter the level of amputation, cause of limb loss, or time since surgery, the same issues kept surfacing. These weren’t niche complaints. They were almost universal. That’s what struck me most. Whether someone was new to limb loss or decades in, whether they lost their limb in an accident or were born with a limb difference, whether they walked with a prosthesis or relied on other mobility aids, the same challenges kept appearing. It was like everyone had been carrying the same list of aggravations in their head, just waiting for someone to share it with. These were the issues that came up again and again:
Moving around at night with no leg on
My social media followers absolutely hate getting out of bed at night. For many, waking up to use the bathroom or check on a child turns into a slow, awkward shuffle on crutches or a flat-out crawl on hands and knees. Many admitted they avoid drinking water before bed to minimize the chance they’ll have to get up for a bio break. Donning a prosthesis isn’t appealing because by the time people have themselves assembled, they’re wide awake. In the place where people seek comfort and rest—their own beds—limb loss has a dramatic bothersome effect. This issue showed up more consistently in the comments than any other.
Personally, I feel the most vulnerable when my leg is off. That’s one reason I generally only take my prosthesis off around my husband. It also feels very intimate. There are friends who I’ve been close with for decades who have never seen me with my leg off. I can definitely see why this was such a common theme.
Feeling self-conscious about gait
This was another common theme, even among long-term amputees. For many people, all they can think about when they’re in public is how obvious their limp is. This one hit very close to home for me. I am very sensitive about my gait because, to be honest, it’s terrible. Even complete strangers have told me as much! No matter how much physical therapy some of us get, we’re never going to have a “normal” gait. Even when we hide our prosthetic leg under long pants, our wonky walk gives us away.
Stares and questions from nondisabled people
The comments about this aspect of amputee life piled up quickly. People described strangers stopping them in stores, whispering, or blurting out personal questions before even saying “Hello” or “Excuse me.” Some people have gotten used to the wide-eyed look they get the moment someone notices their prosthesis. Others admit that the constant curiosity makes them want to cover up, even in hot weather. A few said the stares don’t bother them as much as the awkward, well-intentioned comments like “You’re so inspiring,” which leave them unsure how to respond.
I have had a love/hate relationship with this one throughout my 30 years as an amputee. As a kid and teenager, I absolutely dreaded the stares and the questions. I wanted so badly to blend in and be “normal.” Now I think of these encounters as opportunities to educate. I absolutely love it when kids ask about my limb loss, because it’s a chance for me to help them feel comfortable interacting with disabled individuals. There are still days when I don’t want to be told I’m inspiring simply for doing my own grocery shopping. But my hope is that the more visible I am, the more ordinary disability will seem to able-bodied people.
Body image and seeing oneself in the mirror
A lot of people talked about the hit their confidence took after limb loss. Several wrote about avoiding mirrors for months because their reflection no longer matched who they felt like on the inside. Even amputees years into their journey said they still have days when they catch a glimpse of their body and feel a rush of grief, shock, or frustration. For others, the issue wasn’t emotional as much as practical: swollen limbs, skin discoloration, or changes in muscle shape made them feel self-conscious.
I definitely related to this one, and I wish pre-teen Angelina had been able to read these comments. I obtained a cosmetic cover at around 12 years old and wore pants all the time to cover my prosthesis. I would cry to my mom about how nobody would ever want to date me because of my very obvious disability. She did her best to comfort me, but there is nothing like commiserating with someone who is experiencing the same feelings. These comments sparked so much conversation and felt like therapy. Trauma and grief are so difficult; add drastic alterations in physical appearance, and you don’t feel like yourself any more. People really sounded relieved to hear that others shared these emotions.
Phantom pain
This subject came up with a kind of weary familiarity. People didn’t just mention it; they vented about it. Some described it as lightning bolts, others as crushing pressure or burning heat that hits without warning. A few said the pain is worse at night, making sleep nearly impossible. Many shared coping strategies with each other right in the thread, turning the conversation into an impromptu resource hub. What stood out most was the sense that phantom pain is both deeply personal and widely misunderstood by people who haven’t felt it.
I didn’t have anything to add in this part of the discussion, because I do not experience phantom limb pain. That puts me in the minority, as 60 to 85 percent of amputees do have to deal with it. In the comments, many people learned about treatments they had never heard of; people talked about what didn’t work for them as much as what did work. People found it especially frustrating to experience a pain that others can’t even begin to comprehend—yet those are the people telling you how to treat it. It was really nice to see this post provide so much support for the community, by the community.
Insurance battles
Not surprisingly, this topic lit up the comments section. People wrote about denied claims, endless paperwork, and the emotional toll of fighting tooth and nail for devices they need just to function day to day. Some talked about waiting months for approvals, while others shared stories of paying out of pocket because appeals never went through. A few said the process made them feel more disabled than the actual loss of their limb. It was clear that this wasn’t just about inconvenience. It was about feeling like the system is stacked against them.
For me, this one hit home, hard! I have spent my whole life fighting the healthcare system. I learned as a child that people who have no clue about my struggles will make the decisions about my devices. They will decide what activities I can and cannot do. A lot of friends and family chimed in on this subject, because it’s often a family battle, not something amputees fight alone. In my case, my parents were my advocates until I was old enough to speak up for myself. On this topic, the community expanded to include family members and enabled them to connect with others and share resources that have helped them through this process.
The Hate U Give
The people who responded to my questions weren’t just making superficial complaints. They were expressing deep frustrations they had been quietly carrying for years, often because there was no one in their life who could truly understand their perspective. The more I read, the more clearly I recognized why the “hate” post opened the floodgates in a way the “love” post didn’t: It gave people a place to say things they often hold back from family, friends, and even care teams. The comment section invited them to talk about the uncomfortable parts without worrying about being misunderstood or judged.
In general, the amputee community is encouraged to focus on resilience. While writing this piece, I actually served on a panel titled “Mental & Emotional Resilience.” We emphasize “inspiring” stories of overcoming adversity and getting back to “normal” life. While these positive narratives are important, they subtly pressure people to minimize or hide their daily struggles. Nobody’s going to admire us for complaining about that persistent sore spot in our socket, or for venting about our fear of falling at night. We don’t want to come across as difficult or ungrateful, especially to the people who work hard to help us and care so much about our well-being. After your prosthetist spends hours fine-tuning your new leg, you don’t want to tell them you still feel self-conscious about your gait. And that friend or relative who’s been your steady, stable emotional rock? You don’t want to reveal all your ups and downs to them.
So people constantly self-censor. “My wife is so supportive, but I keep the phantom pain to myself most days,” one person commented. “I don’t want to alarm her or make her feel helpless. It’s a battle I choose to fight alone.” This type of comment was echoed across the thread, exemplifying the profound weight amputees carry to protect those we love from the reality of our experience. We learn to put on a brave face, but that bravery comes at a cost to our mental health.
Whenever we do try to share our feelings, it’s inherently difficult to explain the limb-loss experience to someone who is nondisabled. If you tell your friend, “My insurance is making me jump through hoops just to walk,” they can offer sympathy, but they cannot truly relate. Tell the same thing to another amputee, and it can produce a cathartic moment of truly being heard. Say it in an Instagram comments thread, and somebody might write back, “Did they deny your knee component too? DM me, I have the appeal template they hate.” That shifts the dynamic from a lonely complaint to a shared fight.
The volume of interaction proved this point. The thread wasn’t just a list of grievances; it was a rapid-fire exchange of validation and actionable advice. Dozens of people jumped in with “Here’s how my prosthetist solved that problem” or “I have the same issue with my residual limb swelling—try this or that.” This wasn’t passive reading; this was active, enthusiastic connection. People were tagging friends and issuing direct invitations to continue the conversation in private.
The overwhelming response to the “What do you hate?” question convinced me that many amputees are walking around with unaddressed needs—like the dread of maneuvering without a leg at 2 a.m.—and no opportunity to get validation, actionable advice, and full understanding. My comments section offered a place where people didn’t have to explain themselves. They just had to name their frustration, and it immediately created a sense of connection.
A De Facto Support Group
In the span of a few hours, the comment section transformed from a simple social media post into a dynamic, spontaneous support group. Support groups succeed because they’re nonjudgmental spaces with built-in empathy. You are not a patient explaining symptoms to a doctor, family member, or friend who wants to help “fix” your problem. You are simply a person sharing a struggle with others who have been there. My post unwittingly replicated this dynamic, with the added benefit of online anonymity. When they speak through their keyboards and from behind their screens, people often muster the courage to say things they’d be too shy to say face to face. Oftentimes this is viewed in a negative light, but in this instance it was such a positive.
The consistency of the responses—the same five or six themes appearing again and again, regardless of the individual’s backstory—solidified this feeling. It was a mass realization that the deepest, most frustrating challenges of amputee life are reassuringly common. In a world where so many of us feel like we stand out and are alone in these experiences, it was a relief to hear how ordinary and widely shared our struggles are.
And by giving people permission to speak openly about their frustration, the post removed the pressure to be “inspirational.” We traded the performance of resilience for the simple, profoundly real connection with people who truly get it—who see, hear, and accept us unconditionally. That’s why the knives came out—not out of anger, but out of a desperate need for a communal experience of honesty. And in that shared honesty, people found not conflict, but connection.
Angelina Martinson is a biomedical engineer specializing in medical devices and prosthetic technology. Follow her on Instagram at @adaptiveamputees.
