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.

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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?