Today is April 14 and various communities mark the importance of support groups in an amputee’s life by celebrating Amputee Support Group Appreciation Day.
As we transition into April, which is Limb Loss Awareness Month (LLAM), we put a spotlight on how support groups make every amputee’s journey a lighter one. If you’re a part of an amputee support group, take this time to look back on your journey so far with them. If you’re not a part of a support group and you’re considering joining one, then this article is for you.
Connect with Others
First and foremost, life is a journey and you should never have to take alone.
Amputee support groups can help you cope with the struggles and various emotions that come from experiencing limb loss. The beauty about support groups is that they bring people who are facing similar issues together—regardless if you're new to amputee life or if you're a seasoned prosthetic wearer.
These amputee support groups promote openness and communication, where members are encouraged to speak up about their experiences and offer helpful advice. Sometimes, the best way to cope is by communicating with individuals who are going through the same experiences as you.
There are others who do not wish to receive support outside of their immediate family and friends, and that's okay. However, it may make a difference when you get to interact with people who know exactly how you're feeling first-hand. Amputee support groups can help you feel less isolated, because you're surrounded by individuals who are either going through exactly what you are experiencing or have already moved past those feelings and can offer valuable advice on how to manage.
How do they work?
Like many other support groups, amputee support groups gather people with a shared interest. Some groups focus on specific areas like age, amputation type, or hobbies and lifestyle choices like rock climbing, hiking, or lifting weights.
Different individuals can start their own support groups—any inspired person with an amputation, a family member who strongly empathizes with the experience, non-profit organizations, advocacies, prosthetic clinics, or other organizations who wish to promote limb awareness.
You have options, meetup with groups based on your comfort level, either interact in-person, on Reddit, or by telephone. Sessions may be led by professionals such as a Prosthetist, Physical Therapist, or Rehab Physician. Group members themselves can also facilitate.
Depending on your need, you may opt to join a group that focuses more on limb awareness education. These sessions may be more structured, and medical practitioners like Doctors, Nurses, or Prosthetists may be invited to join in the session. There are also support groups that are geared towards emotional support and shared experiences, which can be less formal.
(Photo Credit IG @jake_assemblyrequired)
What's in it for you?
Regardless of the type of support group you'd like to join, you will always find amputees who share similar experiences with you. Apart from emotional comfort and moral support, members can also share valuable advice that can help you cope with your situation. Some of the great benefits you can get from joining a support group are:
- Feeling less isolated and judged by the outside world
- It's very fulfilling helping others new to limb loss
- Experiencing empowerment and control over your situation
- Improving your coping mechanisms and adjustment to your current situation
- Able to communicate openly and candidly about your feelings
- Significantly feeling less distressed, depressed, anxious, or exhausted
- Gaining a better understanding of what to expect in your journey
- Collecting advice and information about prosthetic care
- You can compare notes and share experiences about resources such as Doctors, Physical Therapists, Prosthetists, and even talk about insurance qualms and questions you might have
How do I look for one?
Looking for an amputee support group is not a difficult task and there are various options available for you:
- Your Prosthetist or health care provider can help you out. One importance of having a solid relationship with your Prosthetist is that you can ask them questions about support groups. An involved Prosthetist who knows you well can also recommend support groups that are in sync with current needs.
- Consult my friend Google. The world is definitely your oyster, thanks to the internet. After reading this article, do some research. Social networking sites such as Facebook could also help you in your search. Check online forums, like Reddit for any comments or feedback from members or attendees.
- Ask an amputee. Sometimes, all you need to do is ask. Amputee friends or peers may already have a support group you can join.
- Reach out to organizations. Groups such as the Amputee Coalition or Challenged Athletes Foundation may be able to help.
Factor in travel options and how far or often these support groups meet. If you're a new amputee and are still adjusting to your prosthetic, it may be best to look for groups that can facilitate virtual meetings or webinars. If you're able to travel, look for groups that are fairly near you or within your community.
Your amputee support group checklist
Again, like any other support group, amputee support groups have pros and cons. Doing some self-evaluation and determining what you truly need or an in-depth discussion with your Prosthetist can help you choose the right group. Also remember that much like choosing the right Prosthetist, selecting an amputee support group may require some trial and error.
Here are some questions you can ask yourself (or your Prosthetist if you're asking for recommendations) before joining a support group:
- Is it focused on a specific lifestyle, hobby, or sport?
- Are meeting places convenient for me if I attend regularly?
- What's the meeting schedule like? Can I make it regularly?
- Will there be a facilitator or moderator?
- Will a prosthetics expert join in with the group?
- Are meetings confidential?
- Are there established ground rules I should know about?
- Do I have to pay for anything? Or can I join for free?
It's okay if you don't get it right the first time. You may have to attend a few support group meetings to get a feel of things. If at some point you feel uncomfortable or you don't find it beneficial, don't lose hope—you can always try a different group.
Bear in mind that support groups are just as dynamic as your residual limb and change is always constant. Depending on the participants or the facilitators present, you may eventually find the need to join a different one. It helps to be aware and to periodically check if the group is able to provide you with the support you need. Who knows, maybe eventually, you'll end up starting your own group.
It also helps to be aware of your rehabilitation stage and how it compares to the other members of the group. Though a good mix of experiences means a wide range of advice and stories, but this can also be unhelpful or even harmful. If you're a new amputee and you're surrounded by individuals who may have a different attitude about their situation, instead of feeling less isolated, you might end up getting discouraged. Don't feel obliged to keep attending if a situation like this arises. You can always lay low and opt out of some sessions or consider looking for a new group you can join.
What to watch out for
The trial and error process can be tedious but it helps you weed out the amputee support groups that are not for you. If any of these red flags come up, it may be indicative that the support group is simply not for you:
- Meetings that focus on negativity over empowerment
- Groups that require expensive fees for attendance
- Facilitators who constantly advertise (or even pressure) members to purchase products or services
- Groups with disruptive members
As awesome and convenient virtual or internet support groups are, be extra careful and vigilant about the following:
- Revealing personal information such as your legal name, home address, or phone number
- Don't let internet use isolate you from your in-person social network
How to maximize your support group experience
Once you find the support group that’s right for you, make sure to maximize the experience. But also remember that it's perfectly normal to feel shy, uncomfortable, or nervous about sharing your personal experiences when you first join a group. Start slowly with simply listening in during your first few sessions. Over time as you gain more confidence and get to know more about your group mates, start contributing your ideas and experiences.
Lastly, support groups are supplements to your regular prosthetic care, and not the other way around. Talk to your Doctor or Prosthetist if you'd like to explore alternative options on how to cope with limb loss. Therapy or counseling may be other avenues that can provide you the support you need.