I am an avid NPR nerd, however after I heard a piece about lymphedema, I knew I needed to write them a letter....
As a Physical Therapist and Certified Lymphedema Therapist, I was surprised and pleased to hear the word "lymphedema" on Morning Edition (Monday, 2/19/18). As mentioned in the piece, it is often overlooked by health care professionals, at a detriment to our patients.
However, I quickly became disappointed when I heard the following: "They're crying, not only because they struggle with lymphedema," he says, "but because many people, including some doctors, do not recognize this as a debilitating condition that can require laborious, daily care."
Yes, as I mentioned above, many doctors do not recognize this condition. My issue, however, is the constant fear we instill in women when talking about lymphedema. These quotes are perfect illustrations, the patients are "crying," the condition is "debilitating," the treatment is "laborious, daily care."
Even the title of your piece illustrates my point: "She survived breast cancer, but says a treatment side effect, 'almost killed' her."
As a certified lymphedema therapist, I can state that yes, sometimes lymphedema is debilitating and can certainly require laborious daily care, however those are the WORST CASE situations. It is just as likely a woman will notice some swelling in her arm, breast or trunk and with a few visits to physical therapy, will have it under control or even completely resolved.
Your piece is certainly not alone in promoting fear around lymphedema. Many of my patients say some version of "I'm terrified of developing lymphedema!" or react to every novel sensation in their body with a frightened, "that's not lymphedema, is it?" Honestly, this breaks my heart. These are strong, brave, resilient women who have looked cancer in the eyes, and beat it. Why must we then beat them down with exaggerated ghost tales of lymphedema, a side effect they may or not develop, that may or may not be "debilitating?"
When we take this method of fear based education away from lymphedema and apply it to say, back pain, it sounds ridiculous. Can you imagine saying to a person, "Wait! Don't lift that suitcase! You might get...BACK PAIN! Once you get it, it's chronic! You will need injections and surgery to correct it and even then it will require laborious, daily care!" Truthfully, that is a possibility. However it is one out of many possibilities when someone injures their back.
I feel strongly that it is my job to empower my patients with knowledge, not patronize them with fear. I welcome the opportunity to speak to you in greater depths on this topic.
Jenni Rai, PT, CLT
This letter to NPR is just the beginning of my "take the fear out of lymphedema" (catchier title in the works) campaign. Stay tuned for more!
The original NPR article can be found here.
It can't be acknowledged enough- a diagnosis of breast cancer is frightening and extremely stressful, for the diagnosed and those that love them. A good mental health practice is a MUST, but can be hard to get in place. The below is a list of national resources:
American Cancer Society (General referrals and info)
CancerCare.org (General referrals, info and online support)
National Cancer Institute (General referrals and info)
Imerman Angels (One on one support for patients and caregivers)
4th Angel (Caregiver and patient mentoring program)
24 hour support line (not specific to cancer)
Have you found a particular resource to be helpful? If so, post below! We love to learn.