News of the necessity to lose a limb can be a profound experience. Everyone reacts to limb loss in very different ways. There may be anger, frustration, fear, sadness, or loneliness. You may even experience bouts of odd, off-color humor surrounding the experience. These feelings are very common prior to and after limb loss. In fact, many people go through very specific grieving stages. Remember, that everyone reacts in individual ways. The most important thing is to ask for the support you need to get through.
You most definitely do not have to go through such a difficult transition alone. Enlist the support of your friends, family, professionals and co-workers to get through the process. Going it alone to be brave or to avoid burdening others is harmful to you as well as the family. Most loved ones really want to be included in the healing process. There will be missteps in this delicate dance, but know that everyone involved wants to do and react the way that best supports you.
Don’t be surprised after your limb loss with experiencing something called ‘phantom sensation’. Phantom sensation is the sensory experience that the amputated limb is still there. It is natural to have that feeling and it occurs in most amputees. Phantom pain, on the other hand, is often described as intense twisting, burning, and shooting pain within the amputated limb. Patients with prior history of pain in the amputated limb, such as due to cancer, are more likely to develop that condition. The higher the intensity and duration of a painful condition, the higher risk of phantom pain, which makes the pain control prior to surgery a crucial issue. Be open and honest with your doctor about pain levels. This is most definitely not the time to be brave and act like your world is a pain-free vacation. With any pain, though, talk to the doctors and nurses. Mention even ‘phantom sensation’ because it is normal, not a sign of insanity. Say it with me, "Phantom sensation is normal. I am not nuts."
Grief is a very natural part of losing a limb no matter how major the physical loss is. Grieving is a mixed bag of many emotions either going on all at once or in several stages, but grief is normal. Limb loss may feel similar to the death of a loved one because it is a part of the body being lost that you've gotten used to being there. That does not mean that limb loss compromises the quality of the whole individual. Grief may begin right away after limb loss. Or, feelings of grief may not manifest until later in recovery. The process of grieving can typically be broken into five stages, but you take as many stages as you want and need. The phases may happen in any order depending on you. There’s no right or wrong order and some steps may happen several times in the cycle.
You may feel one stage more strongly than others, or get “stuck” in a stage. Learn to recognize these stages of grief:
• Denial (“This isn’t real! It’s not happening to me!”)
• Anger (“Why me? What did I do wrong?”)
• Bargaining (“I promise to live healthier as long as I can get my old life back.”)
• Depression (“I’ll never feel like myself again.”)
• Acceptance (“I’ll find a way to move on.”)
One of the toughest hurdles may be body image acceptance. We all see ourselves a certain way. After limb loss, one's self-image will be off kilter a little bit. You'll be more sensitive about how you look in your clothes, and maybe even more sensitive about things you have control of like your hair, makeup, how your moustache is trimmed, how your tie is tied or how your jacket falls across your chest. It's okay. Accepting the changes to your body will take time. Take it slow, but keep in mind that losing a limb doesn’t make you any less valuable of a person. You will leave your recovery just as valuable and strong, if not stronger, than before.
While going through the physical recovery, allow lots of time for emotional recovery time as well. Take all the time in the world, but commit to accepting and caring for the body as a whole. Accept the help your offered. Don't allow yourself to be treated like a baby for a long period of time. We all deserve some pampering, but it's important not to become dependent over the long term. Learn where you can take the most control and take it as soon as you can.
In addition to friends and family, it might be well advised to seek the help of a professional counselor to get perspective from an unbiased resource about whatever feelings arise. Support groups are also a good way to seek support from others going through the same things. Asking for help can be hard in this transition, but help is a normal thing to seek. Limb loss should not be an isolating event in your life. Reach out far and wide, but also recognize that some alone time is okay. These people are valuable support resources:
• Peer counselors, people living with amputation who are willing to share their journey, are great resources for sharing their “been there, done that” philosophy. They’ve been through the good and bad feelings after limb loss.
• Family and friends really do want to help, but aren’t always sure how to help. Tell them what is needed, how the emotions are running and be patient with each other.
• Psychologists or other therapists can help you work through the adjustment process and move you through the grief stages in a healthy way.
Speaking of friends and family, they can support a loved one’s recovery in many ways, Emotional support is so important. A family member needs understanding and patience. Don’t be afraid to encourage those you love to get back into a routine and help you get back into yours. Also, it is important that your supporters are there to simply listen. Ask questions and voice concerns. Some sadness is normal, but caregivers and loved ones should watch for signs of deep, debilitating depression. Contact a trained therapist if a loved one:
• Feels crushing or unremitting sadness.
• Doesn’t find favorite activities enjoyable any more.
• Won’t accept the reality of the limb loss.
• Won’t touch his or her residual limb or ignores self care.
• Won’t take visits or calls from friends or family.
The traditional benefits of exercising — strength, flexibility, and cardiovascular endurance — all still apply to you after limb loss. Improving balance, coordination and increasing circulation are especially helpful to maximizing physical activity. Research shows that exercise can help you learn to love and respect your whole body again. A study in American Journal of Physical Medicine and Rehabilitation found that people with lower limb amputations were more likely to have a positive body image if they regularly participated in physical activity. Meditation and yoga tailored to the individual’s ability level may also be a great way to tune into bodily and self-love activities.
Go back to work. Go back to school. Resume your routines that were important before the surgery, and find new ways to do favorite activities adapted to your limb loss. In the end, it is important to realize that, although a part of the body is gone, it doesn’t change who you are deep down inside. Realize the truth of beauty really coming from within. Losing a limb may actually help let the inside gifts shine brighter. As a person with a limb loss, you are the same person, with the same mind, heart and soul with many positive gifts to offer the community and wider world. Help maximize those gifts and develop new and unique ways to be an asset to others.