Is It My Job to Educate Others About Lymphedema?

“Is it my job to educate medical staff about the dangers of lymphedema?” That’s the question I asked myself recently while sitting in my primary care physician’s office. I’d gone in for a checkup and had found myself frustrated once again.

I’ve been a patient in this practice for almost four years. The doctor, nurses and lab technicians are aware of my history with breast cancer. I’ve been questioned so many times while there, about the colorful compression sleeves I wear for lymphedema. One staff member actually told me she wished she had lymphedema so she could wear fun and funky patterns. I cringed when she made that comment thinking, “if you only knew…”

My name was called and I left the waiting room following the nurse to the examination area. I was shown to a room and sat down to wait. In a few minutes, the nurse came in to take my blood pressure. After greeting me, she unfurled the cuff and came toward me. I watched as she admired my decorative sleeves. I could tell, by the look on her face, that she was processing the reason for my wearing them. I waited to see what she would do next. Bending over, she leaned in and asked, “Now which arm is OK to use?” I was thankful she remembered! I reminded her I had lymphedema in both arms. She looked bewildered until I said, “You can use my left arm but you’ll have to place the cuff low, between my elbow and wrist.” I thought those were pretty clear instructions until she placed the cuff in the normal, upper arm position. Before she had a chance to inflate it, I gently reminded her she couldn’t take my blood pressure the way she did for most patients. Inside my mind, I was rolling my eyes and thinking, here we go again.

As I began my well-rehearsed explanation about the uncomfortable swelling in my arms and how it began after having lymph nodes removed, I couldn’t help but think medical staff, especially doctors and nurses, should know about lymphedema. Don’t they learn about it in medical school? Although lymphedema isn’t commonly seen in many patients, it’s not rare. I didn’t understand why I was having to explain what causes lymphedema and how it can be exacerbated to people who should be well versed in understanding and treating this malady.

Why is lymphedema such a mystery? In the breast cancer community, the majority of women don’t learn about lymphedema until after they’ve been through surgery to remove their cancer or their breast(s). This medical condition isn’t widely discussed and, as I remembered my own surgical experience, the breast surgeon never mentioned the fact that I might develop lymphedema. This would have been good knowledge to possess and research ahead of time, especially since she was planning to remove one or more of my lymph nodes. Although I didn’t realize it at the time, the possibility for lymphedema, in my case, was great.

The nurse finished taking my blood pressure and smiled as she shared my readings. I was thankful my blood pressure was well within normal limits. As she gathered the cuff and turned to leave the room, she glanced down at my right wrist. “Oh!” she exclaimed. “Now I see you have on a medic alert bracelet.” She came closer and I held up my wrist so she could read the inscription. “No blood pressure, IV or needle sticks on this arm. Breast cancer patient.

“That’s a really good thing to wear,” she said.

Before she could question me, I gave the answer I knew she was seeking. “I only wear the information for my right arm because that’s the side my cancer was on. Although I did have lymph nodes removed in both arms and developed lymphedema in both arms, I know it’s necessary for medical staff to perform tests that require the use of one arm. That’s why I allow them to use my left arm but only below my elbow. A tight tourniquet or any kind of needle puncture could exacerbate my condition making the swelling much worse than it already is now, but hopefully, using the lowest part of my arm, that won’t happen. I’m not trying to be difficult but this is a lifelong condition and I deal with it on a daily basis. In the early mornings, my arms are not as swollen as they will be as the day goes on. That’s one reason I don my compression sleeves right after I wake and in the evenings, I use an electric multi-chambered compression machine to alleviate the swelling and help distribute the lymphatic fluid.”

The nurse looked amazed at my medical knowledge of lymphedema. I didn’t have to share that much information with her and if she hadn’t taken time to listen, I wouldn’t have had the opportunity to educate her. I hoped, after hearing all I had to say, she’d be more cognizant of the treatment of lymphedema so other patients wouldn’t have to “walk her through it” on their visits. The frustrating thing is that we’ve had this conversation before…on my last visit and the visits before. Why hadn’t she retained any of the information? Surely, as soon as she saw the sleeves, it should have jogged her memory that something was amiss.

As one who suffers from the painful condition of lymphedema, I feel it’s my duty to help educate those who “need to know,” even if they are undereducated medical staff. Yes, it’s frustrating and yes, I get tired of going into a long drawn out explanation, but I also want to do everything I can to protect my arms and keep my lymphedema from getting worse.

For those of us who deal with the painful swelling of lymphedema, please know, we’d do anything to reverse the condition. It is not only uncomfortable but unsightly. Lymphedema poses many challenges for us including limited physical abilities, clothing problems, general discomfort in daily tasks and even embarrassment at the size of our extremities. So please, if you see someone wearing compression sleeves, don’t make a flip comment like the one I received at the doctor’s office. If you must, ask questions and allow the person to answer if they choose to do so. Some people don’t mind talking about their medical issues, but then again, there are those who would rather keep their problems private. Be respectful and be kind. We all have issues of some sort, some of them are just a little more visible than others.

And remember, lymphedema isn’t only developed after breast cancer surgery. It can develop anytime there is damage to the lymphatic system or lymph nodes. Lymphedema can affect both arms and legs. It is very painful and doesn’t just go away. It can be treated in various ways such as lymphatic massage, manual lymphatic drainage, through the use of compression sleeves or compression stimulating machines.

Kathy Bates, a well-known actress, is the spokesperson for lymphedema awareness and has done much to help bring the knowledge of this condition to the forefront of social and news media. She is also a breast cancer survivor and suffers from lymphedema. If we join her in helping spread the word about lymphedema, maybe we can all benefit in the future.