Post-Amputation & Mental health
This article is intended to outline the way mental health and the rehabilitation and healing process interact, and provide some insight on what to expect. We decided to use my personal examples to give more of a context and a real-life experiences. Amputees need to process the surgery, their recovery, and maintaining mental health through rehabilitation. Hopefully this will reaffirm some of your experiences and help you be prepared for life as an amputee.
How You Lose Your Limb Affects the Process
Amputation happens for many different reasons. Each amputee’s experience is highly personal and there may be other impacts and considerations involved in their personal process of recovery. Those who lose a limb in an accident may have other resulting injuries and sometimes have to deal with the shock of sudden loss; meanwhile, those who lose a limb due to illness may have other consequences on their health and in many cases the prospect of amputation may loom over them. It’s important to reiterate that the path of treatment is extremely dependent on the patient.
Personally, my amputation was planned. I knew that I would need to get my leg amputated after a failed limb salvage surgery due to Osteosarcoma. While I was ready for the freedom from the pain of my previous surgery, the uncertainty and nervousness that comes with leg amputation was an overwhelming prospect. In order to put the process into perspective I focused on my day to day recovery, and didn’t allow the “what ifs” and uncertainty to cloud my progress of chemotherapy and healing. I think it’s fair to say that for anybody there is no tried and true method to handle losing a limb- living as an amputee is hard to imagine for someone and how life will be afterwards is hard to anticipate. I was able to come to terms with my amputation because I felt healthier after my gangrene leg was gone. Knowing that the surgery saved my life was the first phase of me accepting my new reality.
When you’re healing from surgery and before you’ve been fitted with a device (if that’s the plan for you) it can feel like limbo. I found this time in between was when a lot of the stress and trauma of going through amputation began to bubble to the surface. This is common and it’s important to focus on tasks that provide you some consistency- anything from putting on new clothes in the morning to spending time outside, picking up a hobby and enjoying the moments of getting healthier- anything that gives you a sense of normalcy.
Once you’ve begun physiotherapy, the goal for most people is to be fitted with a prosthesis. However, it’s important to remember that your team is finding what will work best for you, and depending on age or overall physical capability, people may opt out of getting a prosthetic device. First, you’ll meet with your doctor, physiotherapist and prosthetist and get started on shaping your stump- all this can happen within 6 weeks of your actual amputation. I found it jarring to suddenly have a busy, obligatory schedule of physio after having experienced the loss of my leg where I was hospitalized and isolated at home. In this whirlwind of appointments you will be learning how to walk and/or incorporate a new device into your everyday life, and you might feel generally exhausted from learning something so completely new. This process involves a lot of trial and error to get your solutions to work best for you. Having the end goal of walking and maximizing your ability can give you stability in this hectic process. Every small victory contributes to achieving independence.
The rehabilitation process is so physically focused that it can be easy to disregard mental health. Remind yourself of your daily rituals pre-amputation and try and to re-incorporate them while you heal. I spent a lot of time painting, drawing and wheeling outside. Even if it means you have your one coffee every morning or you spend an hour outside everyday- picking your outfit out the night before or doing your makeup. By letting yourself discover ways you adapt in your home life as an amputee (or noticing that some things haven't changed) you’ll be able to have an understanding of the physical differences that can occur post-amputation. These compromises can be frustrating at first and it’s okay to notice that you might have to adapt how you did things before.
There’s a point where the medical focus becomes rote, and you’re allowed to get back to your life. Going back to school or work with a cane, crutches, or wheelchair and dealing with crowds of people is a shock. You might not be as accustomed to all the small talk, interaction, and business around you. You have to deal with telling your story, or choosing not to. This might be the first time you’ve had to deal with living with difference, which can surprise you. People might treat you differently or exactly the same as before, but your mentality toward yourself is what’s most important to develop. Your self-image is going to affect how you’re perceived, and this is a chance to build a sureness in yourself, find your values, and find where you think you should fit in the rest of the picture. The rest will happen on its own.
Even amidst this routine there are set-backs, and that can seem wrong or jarring. It’s important to remember that later complications are normal, even though you might have felt clear of them. While I was using my trial prosthesis, my residual limb shrank more than anticipated. This made me sink too far into my leg, causing blisters and discomfort. I couldn’t wear my socket anymore. While I was waiting to be fitted, I spent a whole summer without my leg, after having completed physio and becoming independent. It was so frustrating, and a mentally debilitating period where I felt I’d lost a year of progress. Since I was fitted with a permanent socket, I haven’t had issues to that degree again.
Healing and being fitted with a prosthesis, or finding the mobility aid that works best for you is a process of trial and error. With every one of these issues you get better at adapting to them and that can become a point of pride. You can help it along by learning to talk about your body and prosthesis in language your care team will definitely understand. Check the Terms and Care Team page for some vocab.
Things level off when you manage to find a solution that works for you. You’re still learning the ins and outs but eventually it doesn’t absorb all of your time. Slowly, more things come naturally and you develop a better sense of what you need, what your limits are, and where your foot is when you’re sitting down. Without the initial chaos it becomes just another aspect of life where you can accommodate your adaptations and recognize the potential your device will be able to grant you.
The Take Away?
Ultimately, you need to remember that amputation is a major life event, that there’s a reason you might feel thrown for a long time afterward. The good news is, it gets better, and continues to get better. There are more people out there that have gone through this than you’d think, and with the resources available to you now, you can connect with us easily. If you’re a new amputee (or a seasoned one, for that matter!) feel free to reach out on Facebook, instagram, or by email at firstname.lastname@example.org .
For more specific info on living well with amputation, visit these War Amps resources:
Healthy Living for Upper Limb Amputees
Healthy Living for Lower Limb Amputees