Life-changing events alter how we look at ourselves and the world. These can be good or bad events. Some life-changing events seem like they might seem bad, but over time, they change a person for the better.
“There are nearly 2 million people living with limb loss in the United States…Approximately 185,000 amputations occur in the United States each year.”
No matter what the cause, limb loss is a significant event in someone’s life. It may well be the most difficult or traumatic experience they face. And then, they are staring down a lengthy, often trying process of adjusting to a new normal. It can also be trying, in very different ways, for those around them.
When the worst happens, and we experience a loss of any kind, grief can set in. This is, of course, a potential for those who experience limb loss. It’s also an opportunity for hope. One of the factors that will determine how well people cope with the loss of a limb is the support they have.
With so many people experiencing limb loss, there is a good chance someone in your life has had an amputation. How can you support someone who has lost a limb? This guide should help you care for them, in the best ways possible.
9 Tips for Supporting Someone Who Has Suffered a Lost Limb
1. Educate Yourself
As we noted above, limb loss is a life-changing event. For many people, life gets even better! For example, people who elect to have limbs amputated to alleviate debilitating pain or prevent worsening medical conditions often feel that it's a relief to move on.
Others come to accept their limb loss, pursue their favorite activities, and try new ones as they navigate a new normal. Regardless, limb loss is always an adjustment.
Educate yourself on what that looks like for them. It is a good idea to do research, read as much as you can about the process, and learn from others. However, the best way to educate yourself is, when the person who has experienced limb loss is ready, ask them about what they’re going through. This is the best way to really support someone.
2. Know What NOT to Say
Finding the right words to say to someone who has lost a limb can be difficult, especially at first. While you can stay on the right track by ensuring you speak with respect, you can also avoid potential emotional and psychological obstacles by knowing what not to say. This includes:
- “You’re such an inspiration.” This can be perceived as patronizing. Limb loss is a significant struggle, and people are at all different stages of their journey. They may not feel like much of an inspiration, or they may feel like it’s not their job to inspire you! They may also feel like you're being condescending.
- “So… what happened?” If you’re a loved one, you will know. If this is someone you are meeting in a casual manner, then it is none of your business! A person with limb loss is not an attraction or curiosity. If they want to tell you what happened, they will volunteer.
- “Does the stump hurt?” First, the preferred term is “residual limb.” Second, while there can be pain or even phantom pain in the residual limb, this is another case where if a person wants you to know, they will tell you.
- “You can’t do that!” Well… often, they can, and in fact do, whatever activity is in question. And if they can’t, they may be working hard with their physical therapist or other medical experts to work on building that skill and capacity. It’s not up to you to decide what they can and cannot do.
- “I know someone who lost an arm/leg. I understand what you’re going through.” No, no you don’t! If you have lost a limb yourself, then you have a very good idea. But you never know the full extent of someone’s struggle, their progress along their journey, and their thoughts and emotions.
- “Let me do that for you.” As a person adjusts to their limb loss and/or new prosthetic, there may be tasks that they have difficulty with. For now. Don’t step in every time they struggle. This is part of the process, as well as an important part of re-learning how to complete certain tasks and building confidence.
Of course, you will talk differently to a loved one versus a casual or new acquaintance. But generally, don’t minimize their experience, don’t offer medical advice (unless you are a doctor trained in limb loss and they ask!), and don’t confuse curiosity with concern.
3. Ask How They Want You to Communicate
You don’t have to walk on eggshells to avoid saying the wrong thing, especially if you ask your loved one how they want to talk about it. There is no one-size-fits-all method for communication, but some principles that will help set a foundation include:
- Letting the person who has experienced limb loss dictate the conversation. It’s their experience, so they can help you understand how and when to talk about it.
- Stay positive and affirmative. Use affirming words and avoid those with negative connotations about their situation.
- Avoid correcting a person’s feelings. If a person with limb loss feels sad, angry, confused, etc., it’s not your responsibility to change their emotions.
- Know that sometimes it’s best to just listen.
4. If You’re Supporting a Child Who Has Lost a Limb…
Supporting a child who has experienced limb loss will be a different kind of challenge.
You are the foremost authority on when to speak and when to remain silent because you know your child better than anyone else. Here are some suggestions on how to talk to your child about the procedure, though:
- Be Honest: You may be tempted to try to conceal the truth about the situation and process. This is not the time to hide or stretch the truth.
- Be Real: Set realistic expectations about how adults and children will react to your child’s limb loss or limb difference.
- Be Helpful: Help your child develop strategies for how to talk to their peers. Your child should not have to try to hide from their limb loss or limb difference. They can help their classmates and teachers understand how they want to be treated.
- Be Positive: You do not want to dismiss your child’s concerns. You want to make sure they feel heard. At the same time, you need to be their biggest supporter and cheerleader.
How to Prepare a Child for Facing Their Peers
Be open and honest with your child about possible reactions from other kids and adults. Many people will probably want to steer clear of your child, which can make them feel alone. Help your child in developing conversational techniques with their friends about their prosthetic limb loss, how it functions, and sharing their own experiences.
5. Realize That This Is a Process
People don’t recover, accept, and move on from limb loss overnight. It takes time - and often, the journey is not linear. They may feel depressed one day, ok the next, great the next, and depressed the next. They may feel all of this, and much more, in a single day… in a single hour!
There are ups and downs, and you cannot expect someone to deal with limb loss the way you think they should. You cannot rush the process or their progress.
6. Help Them Establish Their New Normal
If you’re wondering when things will return to normal; they won’t. The person in your life with limb loss will have to establish a new normal. Establishing a new routine is one of the best ways a person with limb loss will be able to adjust to life with an amputation and artificial limb. If you’re supporting a child or close family member, you might help thing through small details like:
- How to lay out clothes to make dressing easier
- Where to place toothbrushes and other hygiene items
- How and when to prepare breakfast conveniently
- When and how to pack bags, load the car, and depart with plenty of time to get to work and school without being rushed
- Where to place dishes and cooking utensils
7. Start Talking About Prosthetics When It’s Appropriate
Again, if you’re supporting a close family member or child, you may be part of the conversation about prosthetic devices.
You can begin talking about the process of being fitted for a prosthetic device early. Orthopedic Appliance Company (OAC) specializes in restoring mobility and independence to individuals confronting the absence of a limb, either through amputation or congenital difference.
8. Pay Attention to Your Own Feelings
If you are seeing a loved one go through limb loss, it is difficult. No, it’s not the same kind of difficulty - not by any means.
But it can be challenging to handle your emotions, questions, concerns, worries, and frustrations while being supportive of them. It’s hard! Remember that and recognize that you might make missteps, you might say the wrong words, and you might feel stressed or even angry at times. That is normal.
Be sure to get the support you need, too. Don’t put this burden on your loved one; instead, seek help from a counselor or support group. This will better equip you to help your loved one and maintain your own mental health and strength.
9. Have Resources On Hand
Neither you nor the person who has lost a limb is in this alone. Isolating yourself is sure to make everything more difficult and contribute to negative feelings and emotions.
The good news is that there is support out there to help. Here is a great list of resources curated by the Hanger Clinic. The Orthopedic Appliance Company team is also happy to answer questions that you and your loved one have about limb loss and prosthetics. Please do not hesitate to contact us.
To support someone who has lost a limb, think about how you would like to be treated. And then think about how they would like to be treated. If you’re not sure, ask. We would be happy to answer any questions you have at Orthopedic Appliance Company.