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Letting light in: lymphies share the unexpected positive impact of lymphedema on their lives

As the poet Rumi once wrote, "The wound is the place where the light enters you."

The 13th-century Persian poet Rumi once wrote, “The wound is the place where the light enters you.”

I like this quote a lot. The notion of lymphedema (the “wound”) as a source of entry for good in one’s life is something I find compelling and even comforting, especially when I get caught up in the thoughts of “why me” and “why this” that often come along with having a chronic and progressive medical condition.

My lymphedema, although painful and devastating at times, has allowed light to come through and illuminate things in me I thought I’d never find: self-love and acceptance, belief in my own strength, a sense of purpose through my writing, a new understanding of empathy… Some days the light is brighter than others, yet that light is always there, steady and shining.

For that I’m really grateful, which in itself is kind of a strange and nuanced thing. I’ve read pieces by other lymphies reflecting with gratitude on their lymphedema (MsCJay’s thoughtful essay “Thank You Lymphedema” stands out in particular), and have spoken with folks who feel the same. But I get it: it is weird to say lymphedema has been sort of a blessing.

In the hopes of opening up a discussion on the unexpected positive lessons of lymphedema, I posted a mini-reflection on The Lymphie Life’s Facebook and Instagram pages a few days ago. I wasn’t sure how it’d be received, so what I got in response completely blew me away.

View this post on Instagram

"The wound is the place where the light enters you." -Rumi 🔹 🔷 🔹 Lately I've been thinking a lot about my lymphedema journey and the WHY behind it. Not the medical reason "why" but the metaphysical, and so this quote from Rumi really resonated with me. The "wound" of living with lymphedema, although painful and devastating at times, has allowed light to come through and illuminate things in me I thought I'd never find: self-love and acceptance, belief in my own strength, a sense of purpose through my writing, a new understanding of empathy… Some days the light is brighter than others, yet it's always there, steady and shining. Illuminating. I couldn't see it before, but I see it now. 🌞 I know it sounds strange to talk about lymphedema that way, so I'm curious: do you see that light in you? How has your lymphedema revealed different aspects about yourself, or illuminated things in your life – the good, the bad, and the in-between? 💙💙💙

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In your own words

Many of you may not be on social media, so I wanted to share the responses here on the blog so you could have the chance to reflect on them, too, and maybe chime in with your own thoughts. I found the responses incredibly thought-provoking and inspiring — a huge testament to the wisdom of our amazing community!

(Although these comments were left on public posts, I’m only using first names and initials here. Comments have been edited for length.)

So: what unexpected lessons have you learned from lymphedema?

“Strangely, I think I am more self-confident now than I was pre-LE. It’s like I care less about what people might be thinking about me when they look at me because they are probably just curious about my compression and that makes me less self-conscious. In that way, wearing compression is sort of like wearing armor, if that makes sense.” -Sarah K.

“I think of my compression as armor too! That was one of the moments when I began the transition from anger to acceptance….because if it’s armor we’re fighting together, not me fighting my leg. Also because the thought of compression as armor made me feel powerful, not a victim.” -Elaine L.

“I’ve become more compassionate and less judgmental. We don’t know what anyone else is going through. Please be kind to EVERYONE.” -LuAnn L. T.

“On days I am feeling down about my lymphedema or that I just don’t want to deal with it anymore I read your posts and they light me up. You couldn’t have said this more eloquently.” -Allyson H. (Girl!! 💙)

“I was just telling my sister the other day that living with LE is a mental journey through the stages of emotion. Once I got to the acceptance stage I became happier and now I am in advocate mode. It’s powerful to put yourself out there daily and try and make the world a little better by spreading awareness. I love that we now live in an internet world where we can connect in such a nice way. For me it is comforting to know I am not alone and have met some very nice people online.” -Barbara T. H.

“I can’t thank you enough for showing me that I can get through this horrible horrible disease in my leg call lymphoedema! I have had cellulitis 10 times since January! I am a college student studying social services and it makes it very difficult being in class when you have to go to the hospital three times a day for an IV! People don’t understand when I tell them why my leg is so big. Heck I’m trying to understand myself! But thank you so much for just being there and understanding and showing the rest of us that there are other people out there that suffer but can still see the light at the end of the Tunnel!” -Shauna Leigh P.

“As hard and harrowing as this journey has been, it’s hard to imagine who I would be without lymphedema. Half of the things I like about myself were learned in doctor’s offices, advocating for comprehensive treatment (and tbh a diagnosis in the first place). I think a lot of people try their whole lives to understand themselves; chronic illness seems to accelerate that process, for better or for worse.” -Isabelle

Having both parents die of cancer is my inspiration for becoming a CLT.” -Kathleen L.

“That quote is perfect! Everything Rumi says resonates with me and my own lymphoedema journey. All the people I have met, and the light I have been flooded with. I have and often do feel blessed with lymphoedema.” -Katie L.

“I love this quote and your thoughts around it. I can fully relate. I’m still in the beginning of acceptance and exploitation of this healing journey. But yes, on good days I can feel deep inside me a sense of purpose – that a lot of good things enters my life through this crack. A beam of light comes through. It isn’t always noticed, but it is there. And some days even gratitude is there.” -Lovisa

“This quote is perfect. I found this feeling while I was going through yoga teacher training this past month. I started to see my leg as a gift, and make peace. I began to see the difference between the ‘outward self’, the one that always changes, and out ‘true’ unchanging self…It is beautiful when we realize we are not our leg or our scars or whatever. It’s not only seeing that in ourselves, but everyone else as well.” -Lori T.

Do you see that light in you? I understand we can be in different places in our personal lymphedema journeys, so I’d love to hear your thoughts.

How has your lymphedema revealed different aspects about yourself or illuminated things in your life – the good, the bad, and the in-between?

12 comments on “Letting light in: lymphies share the unexpected positive impact of lymphedema on their lives

  1. Julia Archibeque-Guerra

    My 35 year journey with leg lymphedema has been both a source of sorrow and enlightenment. I have become more compassionate and empathetic of others with disabilities. I am humbled with gratitude that there are so many lymphies out there who want to share and help one another. Just when I begin to feel sorry for myself, I come across someone who has it much worse than me. And lastly, surviving cancer and dealing with lymphedema has given me the strength to deal with life’s ups and downs.

    • Julia Archibeque-Guerra

      I don’t remember writing this comment, so thank you for reposting it!🤔😊
      I am now dealing with memory loss due to brain lesions that are a result of 50+ years of suffering with migraines.
      But what I’ve learned from 40 years of dealing with lymphedema is that I am strong and resilient and I am going to do everything I can to slow down the memory loss.❤️

  2. Jane Gregerson

    I do not see that lymphedema has enriched me or my life or anyone I love. It has been limiting and diminishing. If others try to reframe this disease/condition and see positives in order to keep from depression or sadness, so be it. I feel the same about having had cancer. In the same vein, I almost applauded when I heard a younger woman say that cancer had not made her life better. She had a great life before it.

    Does one gain insight into the human condition in different ways when bad things happen…disease, death, losses of any kind? Most likely. The truth is that all life has positives and negatives. This does not mean that negatives are “good” and therefore ennobling or enriching.

  3. Thanks for sharing this with everyone!

  4. Sheryl Breedlove

    Waiting 2 years before being diagnosed has caused me much sorrow. I wish I had taken care of myself more instead of worrying about other family members. I don’t think I have truly accepted having this problem because I have such a hard time wearing compression garments, especially when it is hot. I don’t like shoes or sock, or hose. I am trying hard to at least keep my feet compressed otherwise I can’t find shoes to wear unless you count those terrible orthopedic type. I read all I can about lymphadema & I am so impressed with those who have lived with it for years. Their tips, guidelines, etch has helped me tremendously. I am trying to see the positive in this & so far the only positive is that maybe someone else won’t have it. I have learned a lot about this disease & I hope to help others when I am asked why do I have one leg bigger than the other one. I have a good therapist who would like for me to wrap with bandages more, but I just haven’t got to that stage where I can do it more than once or twice a year. Thanks for being here for me.

  5. I am 76 years old now and was born with Lymphoedema (although in fact it was called Milroy’s disease then) in both legs which has now progressed to both feet. I struggle to find shoes. I struggle to find trousers and/or jeans wide enough to accommodate my swollen limbs. I have to wear compression hosiery which is not pleasant in hot weather. I tire very easily, I cannot stand for long without having pain in legs and feet, I don’t wear skirts or dresses – have not done so for years. Each bout of cellulitis leaves my skin more discoloured, marked and ‘lumpy’ than previously. It never goes away, it never improves, it just gets worse. I dread, absolutely dread, the summer months, because the heat makes my daily living at times almost unbearable. BUT – I only gave up work last August on my 76th birthday. I have just got on with my life. I have never known anything different. I choose to wear trousers because I don’t like looking at my legs or feet, not because of what others may think. Sure, it makes me depressed at times but what can I do? Get on with my life. Nothing can make it better so I just carry on.

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  7. greta Tisdale

    I have enjoyed rediscovering dresses. So floaty, they just hang on my shoulders. I love the airy ventilation, now that I am wearing compression pantyhose plus other under garments everyday. I was stuck in a jeans identity way too long. This has been fun, thrift shopping for new outfits to try out. Lighter weight and texture fabrics, wild prints!, than standard jeans and a t-shirt ! A new fashion persona has been born.
    I also see others with disabilities with more compassion, I see that they are on the insides completely whole like I see myself on the inside. Where before I am ashamed to admit, I might have been a bit dismissive and thought less of them or ignored when I passed by. No longer, now it is always an acknowledgement of each individual with a nod and smile as we pass each other.
    One negative I still have not known how to deal with is when I see someone is angry at their disability. I see the wound they are creating with their emotions and their thoughts.

  8. You know, reading the comments here. I see anger, resignation, inventiveness, faith, acceptance. As my Uncle Jimmy might have said, “Welcome to the human race, folks..” I take the bus a lot and in NYC mass transit can be quite revealing, especially with mobility devices, canes, and noticing City bus drivers who are not always thrilled to ‘ramp down’ in order that NYers with physical limitations can board or, disembark. Though I prefer the idea of being understanding, or changing into looser clothing to deal with a condition like LE, I must acknowledge, from hubby’s challenges: physical discomfort sometimes is part of the day’s events – and not something easily dismissed, or laughed off. Still, the way we approach and deal with things can make such a difference.

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