A few weeks ago I received an email from a woman with lymphedema:
Hi! Reaching out to say THANK YOU for your article on looking at the positives in living with lymphedema. While it’s still a challenge for me, that post was a much-needed eye-opener. Self-love is a challenge for me […] And I’m not sure how to practice self-care in ways that don’t involve food or spending too much money. Do you have any recommendations?
This lymphie lady — we’ll call her T. — has lived with primary lymphedema in both legs since she was twelve. Feeling confident has always felt “out of reach” for her: faced with harsh teasing from other children, she quickly got into the habit of hiding her body with long pants and baggy clothing, even at the beach.
It’s been hard for her to accept herself and feel hopeful about the future, but now that she’s in her mid-30s, T. said that she feels like “it’s time to stop treating my condition like a hindrance, and accept that it’s a part of who I am.”
“‘Self-care’ is a very intriguing phrase to me,” she continued. “I’ve spent so much of my life not caring for myself.”
T.’s experience — which has been shared here with her permission — is one that’s all-too relatable, and the idea of “self-care” is definitely a bit daunting when you’ve never given yourself that sort of positive attention before. I’ve got some ideas that may help, so with T.’s blessing, I’ve adapted my part of our email exchange to share with you all.
My Favorite Self-Care Practices: An Illustrated Guide
Please keep in mind that I’m “drawing” (get it?) from my own personal experience, so what works for me may not work for you — although it’s always worth a try!
Pampering my lymphie leg
I used to hate my lymphie leg. I felt so much anger and shame around it, and this resentment translated into a lack of care: I didn’t want anything to do with my lymphedema, let alone actually wear my compression garment or do my drainage massages. Needless to say, this neglect made my swelling worse. Something had to change, so I started with my thinking.
Nowadays, I take time to pamper my lymphie limb by doing things like rubbing moisturizing lotion on my legs, painting my toes a cheerful color, or wearing soft, comfy socks. My lymphedema maintenance routines are now an extension of “me-time”: when I use my compression pump or do my manual lymphatic drainage, I use it as time to read a couple chapters of a book or catch up on the latest episode of my favorite TV show. (More often than not, my pump time turns into nap time!)
It may seem silly but doing these things really helps re-frame the way I think about my lymphedema and my body — it’s like a little peace offering to myself! Without the resentment I’m much more compliant with my treatment routine, so my swelling has improved, too. Living with lymphedema may sometimes feel as though we’ve lost control over our lives and our bodies, but exercising self-care and acceptance is a great way to regain it.
I spend a lot of time on my phone and computer for work, which means I inevitably procrastinate and scroll through my social media feeds. It’s a dangerous trap to fall into: I look through the endless stream of posts and think, wow, that person has amazing legs, this one has a happy relationship, that one’s travelling the world… all that comparison leaves me stuck in an unhealthy headspace, and it’s easy for me to lose sight of myself.
To prevent those feelings, I try to practice a digital disconnect and limit my time on social media. Rather than staying glued to my phone, I stay grounded by focusing instead on my real-world connections with friends and family and with myself. One joy I’ve discovered is that I really like doing things alone, be it going for a walk, taking myself to lunch, or visiting a museum.
It’s important to participate and engage with our own lives rather than stare at a screen, mindlessly scrolling through the lives of others. It’s like the line from the movie Auntie Mame: “’Live’ — that’s the message! Life is a banquet and most poor suckers are starving to death!”
Enjoy the banquet. Silence your phone and be present with yourself and others. Opting out of the constant connection we have through our phones and computers feels weird at first, but it’s definitely rewarding.
Differentiating between “can’t” and “won’t”
When I’m feeling upset or hopeless about my lymphedema, I get caught up in “can’t”s: I can’t wear shorts, I can’t go out in public, I can’t let people see my leg.
My twin sister would get so frustrated when I’d slouch into my “can’ts”: “It’s not that you can’t,” she’d bluster. “It’s that you won’t.”
And she’s right — there’s a difference. I can do anything (within medical and physical reason, of course). So when I say I “can’t,” what I’m really saying is that I “won’t” because I’m ashamed or embarrassed by my leg, or worried about other people’s judgments.
If I catch myself in “can’t-mode” I hit the pause button and ask myself which is it: can’t, or won’t? Identifying what I’m feeling helps me re-evaluate the situation and get a little surge of confidence to challenge those self-imposed limitations. It helps, too, to take the time and examine where my “won’ts” are coming from, so I may ask myself how I can overcome them.
It’s liberating to realize you actually can do or wear things, if you so choose!
Talking with other lymphies
Friends and family can be a great source of support, but talking to other lymphies who can joke and laugh and cry with you over the daily ups and downs of life with lymphedema — that’s really special and empowering.
Social media is great for connecting with our community, on both local and global levels. If you’re on Facebook, there are a ton of private lymphedema support groups (the UK spelling “lymphoedema” yields even more results); there’s also a huge lymphie presence on Instagram and Twitter if you search lymphedema-related hashtags. Check around to see if there’s a support group in your area that you can join, too, and if there aren’t any, consider starting one!
We’re all different people leading different lives, but there’s a lot that’s relatable within the “shared experience” of living with lymphedema. It’s a thread that connects us. Reach out to a fellow lymphie and see!
Self-love and acceptance take practice and time: there will be days when it comes real easy, and days when you may feel like you’re going through the motions (or hardly any motions at all). It’s OK! Be gentle with yourself on this journey and know you’re not alone on the path — there’s a whole world of us out here, walking alongside you!
As for T. — she’s been finding her way back to the things that make her genuinely happy and re-acquainting herself with her self:
“I want to love myself and what little time we have left on this planet,” she said. “I went clothes shopping the other day, and my friends made me buy a dress that doesn’t hide my swelling. I hope I have the confidence to wear it someday.”
You’ll get there, T.! We all will, at our own pace.
What do you do to take care of yourself and your lymphedema? How do you practice self-care?
Big thank-you to the phenomenal T. for inspiring the post and for being so willing to share her story with the rest of us! 💙
For more on self-care + other mental health topics, check out these past posts:
- Coping Mechanisms (2011)
- Wishful Thinking vs Acceptance (2012)
- Facing a Ticking Clock (2014)
- Take time to pause and ask yourself this one question! (2015)
- The importance of practicing gratitude (2015)
- New Year’s Resolutions for Lymphies (2016)
- Chronic Positivity: Choosing to stay positive in the face of a chronic health condition (2016)
- Living with Intention: (Belated) New Year’s Resolutions for Lymphies (2017)
- Reflections on life with depression and lymphedema (2017)
If none of those resonate with you or you’d still like some more ideas, this post from TinyBuddha.com is a great resource!
Another thoughtful post thanks. Can’t vs Won’t rings so true for me at times.
Sent from my iPhone
Thanks a lot for this post! I just discovered a month ago that i have lymphedema in both legs (of course i have known for a long time that that swelling wasnt normal.. but to me it never had a name and stayed a kind of unreal thing. It took a long time to find a doctor to take me serious, so i feel sad because i think i wasted so much time..) So i just started the whole process of ML and compression and all i was thinking was i cant… i cant accept this, i cant wear my normal pants or shoes anymore, i can never wear shorts again – so i shopped very wide fit cloth to hide myself in.
Reading your Blog made me realize that hiding my lymphedema would just be playing along societys normativism – it has to be visible to create change!
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