Think for a moment about when you were first diagnosed with lymphedema. What were your immediate feelings? Were they fear, confusion, sadness? Did you feel anger at the diagnosis, or did you feel as though you were completely alone?
Now imagine you are having all of those feelings, except you’re in a foreign country. In addition to your diagnosis and treatment, there are language barriers, cultural differences, and insurance coverage to navigate—all the while adjusting emotionally and psychologically to life with a chronic medical condition.
For Elaine Lies, that has been her experience.
Elaine is an American-born journalist who has been living in Japan for twenty-seven years, and so has the unique experience of receiving diagnosis and treatment in a foreign country.
Aside from a congenital heart defect that was surgically corrected when she was eight years old, Elaine had been in good health for most of her life, enjoying adventurous passions such as hiking, skiing, scuba diving, and travelling to exotic locales like Southeast Asia.
In 2007, Elaine was sent to cover an earthquake. The assignment was physically demanding: all the running around and hiking over landslides caused her a lot of pain in the back of her knee, and her lower left leg was so swollen that she could feel the fluid slopping around in her foot. It seemed to have resolved itself, however, until a few months later when an unrelated fall sent her to the hospital. The nurses were more interested in her left leg than her injuries sustained from the fall, and they conducted several tests.
“I was diagnosed with varicose veins,” Elaine said, “Which was not a huge surprise since my mother had them.”
Elaine left the hospital with instructions to wear a commercial compression stocking, and she complied. As her swelling gradually diminished, things seemed normal again: she threw herself into her work as a journalist while making time for her adventures, such as diving in far-flung parts of Indonesia. Everything seemed fine for a few years.
Everything seemed fine, that is, until the end of a particularly hot summer, when the swelling in her left leg returned; this time, the swelling went up above her knee. Elaine went back to the hospital where they diagnosed her with deep vein thrombosis, despite no indications as such from the tests and scans. The doctors told her she was being “stubborn” because she did not want to start taking the anticoagulant warfarin right away. Here, the cultural differences and language barriers began to emerge as Elaine struggled to find the words to communicate her medical needs.
“I had to look up a lot of the words in a dictionary, since they hadn’t been included in my standard Japanese vocabulary up until then,” Elaine explained.
The doctor referred her to a clinic, where they performed a lower body CT scan and told Elaine to return in two weeks to discuss the results and have a consultation. Unfortunately, four days before this follow-up appointment was to take place, disaster struck.
The March 2011 earthquake and tsunami hit eastern Japan, causing extreme devastation and destruction across the region, including meltdowns at nuclear power plants. Elaine postponed her appointment as she grappled not only with fear and grief, but with sixteen-hour work days covering the growing disaster.
“When the day for my appointment came—March 15th—it was the worst day for the nuclear situation,” Elaine said. “I seriously thought the world was ending, so I put off the doctor’s appointment for another week since who cared?”
The next week, Elaine finally had her appointment, where she was definitively diagnosed with primary lymphedema in her left leg. In Japan, lymphedema is called “rimpa fushuu” and written with characters that suggest “floating tumor.”
“When I finally went and was diagnosed, and sent upstairs to see the lymphedema therapists,” Elaine said, “our conversation was punctuated by the windows rattling in their frames through another set of aftershocks.”
That whole first year after her lymphedema diagnosis seemed to be punctuated by aftershocks: “I remember running out of the house when a strong one hit as I was doing self-massage one night,” Elaine reflected.
The clinic, as it turned out, was not very supportive of Elaine emotionally nor clear about lymphedema and its associated risks: “[The clinic had a] bad attitude, not telling me anything that I needed to look out for, not warning me about a large open cut on my leg,” Elaine said. She cites their bad attitude and lack of information as to what landed her in the hospital with a raging case of cellulitis and an all-body infection.
“I’ve gone through the usual: ‘why me,’ anger, disappointment,” Elaine said, “And I still sometimes have to fight anxiety about the possibility of getting sick again. The hospital experience was my first in Japan, so it’s had a more traumatic effect on me than it perhaps should have.”
Shortly thereafter Elaine found her current clinic, which is staffed by foreign-trained therapists that are much more supportive and knowledgeable about lymphedema. There, she learned how to bandage and perform self-massage, and she continues to visit the clinic on a bi-weekly basis for manual lymph drainage massages. Twice a year, Elaine wraps her leg 24/7 for a month or so before getting a new stocking; she had started out with a Class Two thigh-high but, after her swelling increased a bit, she now uses a Class Three.
Elaine stays consistent with her self-care and wears her stocking daily, and she’s not embarrassed about wearing her stocking in public: “Since people stare at me in Japan already just because I’m a foreigner,” Elaine said, “I’m not at all self-conscious about going out in my stocking, even in above-knee skirts or shorts.”
Elaine wasn’t always consistent about her self-care, however, although she has found a way to make it seem more of an enjoyable experience than a chore: “I wasn’t doing daily manual lymph drainage for a while,” Elaine admitted. “But now I’m back to it and have tried to make it a ‘mini-spa’ experience—candlelight, incense and relaxing music—and have found it also really relaxes me for sleep.”
For about a year or so after her diagnosis, Elaine worried that she would not be able to continue traveling to the tropics like she so loved to do—if she got a cut on her affected leg, she might not be able to get the proper medical care she needed to stave off an infection.
“I used to see photos of exotic places and mentally think, ‘Oh, I should go there,’” she explained. “So thinking I couldn’t was really painful.”
Not one to give up, though, Elaine began adventuring again: three years ago she started kayaking, which is a great core exercise; in 2013, she went scuba diving in Bali (the all-body compression of both the dive suit and the water pressure is great for her leg); this past winter, she went downhill skiing. Elaine is ever-vigilant about her lymphedema while adventuring, wearing kayak shoes to swim in the ocean and, when diving, covers her affected foot with a sock before donning her dive boots.
Elaine marking her 200th dive in Bali last August! (Video courtesy Elaine Lies)
There is something Elaine misses from her pre-lymphedema life, however: “I really, really missed—and still miss—going barefoot,” Elaine admits. “Which is weird because, hello, I live in a giant city? Wearing sandals in summer is impossible due to how crowded my commute is and the possibility of somebody stepping on bare toes, but I’ve discovered the joys of TOMS slip-ons, and I wear sandals in the office to at least get a taste of the summer.”
When it comes to insurance coverage, Japan has comprehensive national medical insurance with a flat co-pay fee of 30%; if you surpass a certain amount of medical fees for any one month, you either receive a rebate for the extra amount or, if it’s during extended treatment such as chemotherapy, you get a special card that holds your medical fees down for the duration.
Lymphedema treatment receives very limited insurance coverage in Japan, although by submitting special papers it is possible to get part of the cost of compression stockings covered. Elaine says they are working to change this, although it is going very slowly.
The treatment itself is different in Japan than in other countries, most noticeably in that they do not use or recommend night garments. They also don’t ban hot baths: “Visiting hot springs is a major recreation in Japan, as are baths,” explained Elaine. “You can’t say ‘no hot baths’ to a Japanese person.”
“The biggest difference is probably emotional support,” Elaine said. “Japanese people are pretty stoic in general, and also quite pragmatic, so that at first I was given a deluge of advice and things to watch out for that was quite overwhelming and frightening, and there was no acknowledgement that dealing with this might be hard.”
Elaine shared that she has cried in the clinic more than once, especially in the beginning of her lymphedema journey: “I think they think I’m kind of a whiner,” Elaine admitted. “The attitude of ‘shigata ga nai’—‘it can’t be helped’—is very strong here, and so there’s a general tendency to suppress negative emotions, sometimes to an unhealthy degree, and to pretend the feelings aren’t there.”
She maintains that this same pretense can be useful sometimes, though.
“Within the bad luck I feel luckier more often than not,” Elaine reflected. “It’s only one leg, it didn’t develop until I was fifty so I had time to have lots of adventures before that, and so on. And, I have some great friends who joke with me about it—including one who wrote a parody of ‘Macho Man’ called ‘Lympho Leg’ that is utterly hilarious and never fails to cheer me up. Yes, it’s a pain in the neck and takes lots of time on a daily basis, but I’ll keep pushing the boundaries as I can and, maybe, like the kayaking, there will be new discoveries.”
Header photo by Joe deSousa on Flickr.
Yours is the most helpful best post I’ve ever read on lymphedema. Love your outlook. Thank you.
Having lived in Japan pre-diagnosis, it’s hard to imagine the stress of that compounded by cultural differences. My diagnosis came a few years after returning to the US, and was delayed, like yours, due to varicose veins running in my family.
My initial therapist tried to be positive but didn’t really understand the emotional pain I was going through. Later when I found a clinic that asked questions about self-image and emotional well-being in their intake, I was overcome with gratitude. It’s still tough.
I hope the year since you contributed your story has been a good one.
Thank you! Interesting about the varicose veins, I wonder if anybody has done studies on the relationship between them and lymphedema? The year was a little bit of a challenge, since i had to have a heart procedure related to my childhood defect, and that meant exercise limitations for a few months so it was a fairly kayak-free year. But lymphedema-wise it was pretty calm, and I was able to go diving in August.
Elaine, I live in Tokyo and I’ve had lymphedema for 1.5 years now. It’s a tough process, I’d love to find out which clinic you used, if you are/were based in Tokyo. Thanks, from a fellow Tokyo Lymphie!
Hi! It’s called the Bethel South Shinjuku Clinic, 03-5333-8482. I originally went to the Ashino Clinic in Kinshicho but didn’t really like them. I’m on FB so look me up and then we can talk more privately.