By Mary Frances Kastelberg
August 2, 2019
When I was sixteen years old, I got in the car and sobbed. This was not the first time my mom drove, fighting back tears herself, in silence, to let me cry. I had just been told by my lymphedema therapist that there was nothing I could do to change my fate. My leg would always be larger than my left, never reducing past twenty-six percent larger than the other. I remember two years prior, head leaning against the window as my parents rushed me to the Emergency Room listening to Change Your Mind by the Killers. My ankle was red and swollen, and confusion swirled in my head. I hadn’t fallen, rolled my ankle, anything. Sitting on the ER table, I looked up and soaked in the information the doctor was telling me. “It’s just part of your condition. Sorry.”
After years of being told things like “Sorry.” and “There’s nothing else you can do.” and “It will just keep getting worse.” I decided to get angry. I was not about to let someone tell me how the rest of my life was going to go. I told my mom that day in the car, tears streaming down my face that I would never see that woman again, at least not until I could walk in victoriously with two legs similar in size. Since that day, I have truly understood the value of a good lymphedema therapist, and being your own advocate.
I transferred clinics, in time to find an amazing therapist who not only had a fantastic, friendly bedside manner, but also had the wisdom and confidence to not believe she was always right. She continued to research and further her skills, questioning the traditional treatment, and telling me to never give up. Following my first surgery, she worked tirelessly with my surgery team in California, across the country, to ensure that I had optimal care. She never gave up on me, and therefore, it was so much easier to not give up on myself.
Working day after day on people, I know it must be challenging to view everyone as an individual. You get tired, burnt out, overwhelmed, and hopeless. Every patient seems to blur together, and there is no longer any passion in what you do. However, for the patient, we need you. We need to be confident that the treatment and information you are giving us will help. Years after the night in the ER, I found out that if my first therapist had put me in flat knit compression stockings rather than circular knit, it would have prevented the lymphedema from taking control of my calf, foot and ankle. Now, my foot and ankle are my consistent problem areas. I’ve thought about how my life would be so much easier, if only the therapist had known.
We often find our strength extrinsically. Therapists who truly care about you, not just your leg, or your records, can make all the difference in our journey. There are more and more therapists getting certified daily, who are accredited and more than competent when coming to edema management. It is important for us to have confidence in who is caring for our bodies. Not only should we be able to trust our therapists, but we should also be able to trust ourselves. It is crucial for you, as a patient with an understudied condition, to be knowledgeable and question. You have to be your own advocate. Work with your therapist in order to grow and learn together, and be guaranteed a positive outcome.
Finding a good therapist can seem impossible, but there are resources to help. The National Lymphedema Network and the Lymphedema Education and Research Network are two resources that can be utilized in order to find a therapist near you who is appropriately certified. All you have to do is go to the tab under their websites. I also recommend being honest with yourself about how you interact with your therapist. There are some people who will be better suited to your case and your disposition than others. Don’t stop looking until you have found someone perfect for you.
Remember to take a deep breath. You are the expert of your own body. You know how it feels, day in and day out. Be your own advocate, and do not settle if you believe that you are not receiving adequate care.
National Lymphedema Network:https://lymphnet.org/find-treatment
Lymphedema Education and Research Network: https://lymphaticnetwork.org/living-with-lymphedema/find-a-lymphedema-therapist/
P.S. Thank you for changing my life and teaching me that there are amazing therapists out there Angela and Julie:)
Lymphedema has been one of the hardest, yet most integral aspects of my life. I believe it has given me the necessary skills and drive to strive to be influential in the lymphedema community. It has truly provided me an avenue to reach and help those around me. So, stay tuned, there will be many more lymphie adventures ahead!
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