When living with a chronic health condition like lymphedema, “staying positive” is somewhat of a weighted phrase: some days it’s an empowering and buoying sentiment, but other days it can feel like an empty platitude that seems to ignore how difficult it really is to stay positive when living with an incurable condition. It’s a well-meaning phrase and idea, but can be a frustrating one to hear if you’re struggling. So, when I was recently asked how I manage to stay positive despite my lymphedema, I was a little stumped with how to respond.
Ideally, positivity is a state of being, a mindset in which you frame your daily life. More often than not, however, I’ve found that “being positive” has been more of a conscious choice than a default mentality—some days it takes serious work! The practice of choosing positivity has really become a necessity for me, although I didn’t always look at it that way.
Falling into a hole…
When I received my official diagnosis of lymphedema as a teenager, I felt as though I slammed into a brick wall. I had lived with my “big leg” all my life, but now it had a name and a prognosis, and thus it became more real—more permanent. I was suddenly issued a life sentence of medical compression garments, drainage massages, and uncomfortable swelling that could progress not just in my affected leg, but potentially to other parts of my body, and I felt utterly hopeless; I was devastated that my body was acting beyond my control, and I felt as though it had betrayed me. It was hard enough being a teenage girl, let alone one whose leg spontaneously leaked lymph fluid during class, or who couldn’t go shoe shopping without having an emotional breakdown over shoes that didn’t fit.
I was disgusted by a body I no longer recognized, and was convinced it rendered me unloveable, unattractive, and unworthy. The shame and fear I felt around my lymphedema compounded with other underlying issues and I sank into a dark place, questioning the point in even taking care of myself: if my body is already not working like it should, what did it matter what I did? I developed a life-threatening eating disorder, using the desperate logic that if my body was smaller, my leg would get smaller; I abused drugs and alcohol in efforts to escape my reality and my responsibility to my health. It was utter chaos, but at the time it was the only way I could cope with the turmoil wreaking havoc inside me.
I stagnated for many years in this toxic limbo of simultaneous panic and apathy towards not only my lymphedema, but towards my self and my well-being, and I became run-down and exhausted—emotionally, mentally, and physically. My behavior began affecting other areas of my life, and other people, too. After five hospitalizations and rehabs in the span of three years, I realized this self-destructiveness wasn’t working; I needed to make a change.
…and climbing out
Change requires work—lots of work—but the cool thing about change is that, when you make one change, it enables more to follow.
Through my time in treatment and extensive work with a therapist, I learned how to regard my body from a place of gratitude and acceptance rather than resentment. This new clarity has allowed for me to manage my lymphedema better than before: instead of stubbornly ignoring what my body needed, I began taking a proactive role in my health. I started going to my lymphedema therapists more regularly, wearing my compression garments daily, and doing my at-home treatments. Since I’ve stopped denying my lymphedema, I’ve been able to accept it and take care of it the way I should, and I’ve seen a noticeable reduction in my swelling now that I’m actually doing the work!
I have lymphedema, but my lymphedema does not have me. It may require me to make some adjustments to my life, but I can live with that. It’s worth it. I am worth it. I’ve finally realized that my health is absolutely paramount to me, and I refuse to deny myself the care and treatment I need just because I’m anxious about what other people may think, or because I’m caught up in wishing things were different. Hey, everybody’s got something they wish was different—but when it comes to our lymphedema, there’s literally no point in sitting around wishing it away. That doesn’t do us any good! Instead, we’ve got to do what we need to care for our bodies and keep our swelling under control so that we may live to our fullest.
One of the biggest things I’ve learned throughout this constant journey is that thoughts are powerful. Think about that for a second. Imagine all the energy spent on dwelling in the negative—all the thoughts of “I’m not good enough” and the “I wish things were different” and “I hate having to live with this”—and focusing it instead on positive thoughts. Imagine what you can accomplish! This quote by author Carlos Castenada sums it up pretty succinctly: “We either make ourselves miserable or we make ourselves strong. The amount of work is the same.”
Every day we are faced with the opportunity to make hundreds if not thousands of choices, big and small, all which carry meaning—it’s important to be intentional in what we choose. This applies not only to our actions, but to our thinking, too. For example, when I catch myself saying “Ugh, I can’t wear a skirt,” I confront myself with honesty: “It’s not that I can’t, it’s that I won’t. I’m choosing not to because I’m feeling self-conscious about my leg showing, but I can wear a skirt if I choose to challenge that thinking.” Getting my necessary compression every day is a hell of a lot more important than whether or not a stranger stares at my visible garment, after all!
Look, I get that it’s hard. Some days all I want is to marinate in my feelings and just be sad. I think it’s important to allow yourself the opportunity to feel those feelings, because it’s unhealthy to deny that living with an incurable and progressive medical condition really, really is the pits sometimes. There’s a lot of value in having a good, cathartic cry—but there’s also a lot of value in laughter, in acceptance, in reaching out, in practicing gratitude. Think of those sad, negative thoughts as leaves floating on the surface of a river: see them, acknowledge that they’re there, but let them keep floating by.
Today, I get to live as my best self because I choose to do so. It’s still a lot of work and some days are harder than others, but it’s a worthwhile struggle: I feel a whole lot better now than I did when I was living in a cycle of self-abuse and self-loathing. And, most importantly, my leg feels better, too.
I asked how you stay positive, and here’s what some of you shared:
“I struggle with wrestling the stocking on every day, then with the heat and discomfort of wearing it all day…especially when I love being outdoors and we live in Georgia. I’m going to be very honest here. Our teenage son died in a car accident nearly 20 years ago, and after living daily with that pain, year after year, cancer was just a bump in the road. The lymphedema and immune issues that developed after the cancer are most certainly life-interrupting, but nothing like the death of a child. I have tried everything I know of out there to make my legs match, including surgery last November, and I still hold out hope, but honestly, my best remedy is to swim and dream of better days. It may not be the healthiest response, but choosing to keep moving and try not to think about it keeps some of the dark clouds at bay. I pray for a real cure.”
“I have only just recently started having hope. My lymphedema is throughout my body after a bilateral mastectomy. I have been swimming daily for five months and I am finally able to feel like I am getting somewhat of a handle on my swelling and pain. Of course some days it is over the top, weather (heat) effects it much worse, but I feel like I have hope.”
“Being positive is easier than pulling yourself and all the people you love down. There are times I am really sad and even mad that I am dealing with lymphedema. But I focus on the strength God has given me. My job is not done here yet or cancer would have won three years ago. My family support is amazing which helps staying positive. Each day I also realize what life events would I be missing if I give up or if I didn’t beat Cancer. My daughter’s high school graduation is this month. My son graduated from college this past Dec. My oldest and his family will be here in two weeks. I get to spoil my grandson. So my moments of joy no matter how big or small keep the mind happy and glad I have been given more life to live. Sure it is not perfect. I am a nurse and at times I blame myself. But why? That won’t take lymphedema away. Chin up. You are not alone in this battle. Dig deep inside and have a serious conversation with yourself. It is ultimately your choice. You will be ecstatic to realize how strong this can make you and how much those around you love you. Good luck. Praying for you!”
“I try to remember there is no cure but light at the end of the tunnel with treatment that will help control it. I have a leg pump and wraps and have weekly massages and there is always other worse off than me.”
“I have to remember to be kind to myself. Rest and elevate when needed. Focus on celebrating life instead of focusing on limitations. I may be slowed down a bit…but I’m still enjoying life to the fullest! I’ve been managing Lymphedema for 17 yrs now (left arm after lumpectomy for breast cancer & lymph node removal). Even managed having another baby after Lymphedema diagnosis (surprise baby!). This week I’m flying to NJ to meet my new little niece just born! I know I’ll have to manage my arm more intensely during/after flights back & forth… but I’m ok with that…”
-Liz R. A.
“Being born with Congential Lymphodema on my left leg I have gone through many challenges. I often heard “you can’t….you shouldn’t”. Then one day I realized I had to live for “ME”. You have to take of “ME”. Being kind, forgiving of oneself, and taking control of your own happiness first to be a better friend, wife, sister, aunt. Once I took care of me I got involved in my community and shared me with others who needed a helping hand. In turn I found out more about myself and how I was valuable.”
“You have to love what GOD Gave you…..I live with it daily not happy about it but what is the alternative!!!!!!!”
-Brian J. H.
“It took me years and years to love and accept myself and 10 months of personal coaching to finally realize that I have value and this doesn’t define who I am. For me being active has kept me strong physically, spiritually, mentally, etc. I still have my moments don’t get me wrong, but it is much much better than it was before.”
-Gisele D. A.
“In some respects I am still in denial. I haven’t quite reached that place of acceptance and don’t take enough time for self care. But I am moving forward. I wear my compression garments every day, look after my skincare and try to live as normal a life as possible. My mantra is “it’s only a fat leg, it could be worse”! I, too have had therapy, in fact, I am a therapist 😊, but that doesn’t mean I have all the answers! I’m taking one day at a time and I’m thankful for my blessings. Perhaps that place of acceptance isn’t so far away!”
“I spent more than 20 years hating my body because of this disease and it didn’t help one bit. I was angry with my body because it wouldn’t cooperate with me, and i was disgusted with how i looked. My appearance consumed me and my thoughts. I became envious of how other people looked, kept thinking about all the things i couldn’t do, envisioned a painful and ugly life, and I shut myself away from people who appeared to have everything I wanted. It wasn’t until I started loving my body, appreciating what it did for me every day and started caring for it, that I experienced a greater reduction in swelling and started living a more fulfilling and satisfying life. You can’t hate your body into health. I have to admit that it took a long time for me to get to this point. And then a bit longer to actively put it into practice. The first thing I started with was to thank my legs every day. It didn’t FEEL true, but it changed my mindset start turning this ship around.”
This article is so timely for me and encouraging. Thank you.
I’m so glad it got to you in the right moment :)
Thank you for the article… It was awesome… I have Lymphedema in my left leg… Mainly from knee down… I have had 1 infection and stayed in hospital for 27 days… It was bad… All the skin came off my leg. Never thought it would ever grow back… Praise God it did… Now it is purplish and has nodules on it… I wear compression hose on it everyday… I have had a few leaks but we’re healed at wound care… I wear a night time garment and have a lymph drainage machine… I would like to know are we allowed in the sand on the beach? I would not go into the water. I do go into a private in ground pool… Do we put sunscreen on the leg? Thank you for info… I had a therapist. But I not told to keep going… Am. Suppose to… I know when I have a lot of swelling because my leg is tight… Wound care Dr, told me to keep him on speed dail… A double thing is my knee needs a replacement… It makes having Lymphedema worse… Can barely walk…
Penny, my therapist told me to be seen twice a year. She does keep track of my leg measurements and checks on the condition of compression garments. I also love the growing trust we have built so I then feel the positive upbeat praise I get for the dedication to my leg. As a nurse I will tell you yes, always apply sun screen to your leg. Do not let a day on the beach cause a sun burn and possible problems. Do not allow lymphedema to run your life just be cautious and as careful as possible. Cover your feet in the sand with some kind of shoe for protection from getting cut or poked. As long as you do not have any open skin the sand would be ok just be sure to clean your foot and leg once you are done. Enjoy life and wishing you well if you have your knee fixed.
Thank you so much…
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I just got back from a trip to Bali, which I thought I couldn’t do anymore after being diagnosed with primary six years ago. I use kayak shoes and go swimming in the ocean, and I wear an old stocking. No problems in six visits! It’s a little weird at first to swim with the shoes on but you get used to it – and it protects BOTH feet from stepping on shells etc.
The leg is a little bigger, because I did a lot of walking in the heat, but nothing that a few nights of wrapping won’t cure.
The leg is a little bigger, because I did a lot of walking in the heat, but nothing that a few nights of wrapping won’t cure.
I always love hearing about your travels, Elaine! You are, to me, one of the “poster lymphies” of living adventurously with lymphedema. I’m glad you had a great trip, and I appreciate the tips re: the kayak shoes! I’ll be keeping that in mind while I swim in the pool this summer (and pretending I’m in Bali… 😉)
Wishing you all the best!
That’s very kind of you! I just do what I do…and it seems to me it took me a hugely long time to accept the situation, so I’m not sure I’m any kind of poster person. But the kayak shoes were a great discovery – they’re tight-fitting, so they don’t get in your way – as I’ve found that TOMS slip-ons are for summer. And they’re actually kind of fashionable!
Beautiful article! Thats what I’m talkin’ about!! xoxoxoxo
Thank you, Sarah!! Always gotta stay positive 💙💙💙
I got diagnosed last year in my forties for my left leg following botched varicose vein surgery. Your blog is just what I needed! I’m not in denial or depression anymore. I’m trying to swim three to four times a week, eat carefully and live happily with lymphedema. It’s not going to define me. I won’t let it.
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