Does this condition make me beautiful or does it make me imperfect?

A short narrative I wrote a few weeks ago when I first started to think about making a blog:

I’m home for the weekend and my mom and I decide to go to the grocery store. What would usually be a normal experience feels anything but. In my new Tevas you can clearly see my larger left foot which is covered in a beige compression garment. It’s never been my favorite thing to look at but right now I feel content.

My mom and I are going to what is basically the only grocery store in my small hometown, which is often known as the place you will see everyone you know. This is my first time openly wearing my compression garment in such a familiar place. Typically, I’d avoid letting my swollen left leg be shown at any cost. I’d rather not get the questions about “What happened?” or “What is that you are wearing?” but this time, that all doesn’t matter. I’m thinking, “People can ask me questions, people can stare and wonder but it’s not going to change how I feel.”

At this same time a year ago, I was wrapped from toe to thigh in bulky, hot foams and bandages. This is a necessary component to treating what causes the swelling in my leg, lymphedema.

I had to take a month off work so I could drive an hour away daily to get manual lymph drainage treatments (a gentle massage that moves lymph fluid out). And in all honesty, it was just plain hard. The wraps were uncomfortable, making it hard for me to sleep at night and they were hot during the day when all I wanted to do was hang out in the summer sunshine.

Although the physical discomfort didn’t make things easy, the most painful part was the emotional discomfort I experienced. Never had I felt so alone. I’d often hear about my friends latest outdoor adventures together while I found it hard to walk from one side of my house to the next in all the bandages. Most of all, I didn’t feel worthy. I felt abnormal, not able to do normal things, I felt stuck.

There was so much shame, even a year ago, that I’ve struggled to overcome my whole life, and here I am sitting here in the car and it all doesn’t matter?

I think about what’s led me to this point of acceptance and there’s a powerful experience behind it with many supportive people along the way who have offered nothing but unconditional love, acceptance and empathy. And still, the most impactful change has been the way I look at myself – not the way others look at me.

Does this condition make me beautiful or does it make me imperfect?

The answer is both. I am beautiful because I am imperfect. I am beautiful because I’ve reached beyond what could have otherwise been devastating to find purpose through my flaws. And most importantly, I am beautiful because I am willing to be myself.

I’m here to share my journey to foster connections with others who might be feeling alone and to spread awareness about life with a chronic condition.

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24 comments

  1. Sue Searing · September 1, 2015

    Love your spirit! I also have lymphedema in my left leg only — a permanent side effect of surgery for ovarian cancer a decade ago. It’s a continuing story of adapting to the condition, testing my limits, and finding over and over again that lymphedema is just one part of who I am and who I aspire to be. This month I turned 65 and went on a wilderness canoe trip for a week. I still feel awkward and unattractive some days, and I resent the time and money I invest in treatment and garments, but in truth, lymphedema has not kept me from doing anything I put my mind to. It will be the same for you! Keep up the great attitude! You are an inspiration!

    Like

    • Allyson Hannah · October 12, 2015

      Hi Sue, wow!! So cool you went on the wilderness canoe trip for a week. I definitely have my ups and downs as well with my condition, it’s always a good reminder to focus on what you CAN do. Thank you for reading & stay in touch!

      Like

  2. Teresa Wilt · September 2, 2015

    Great article! I also have lymphedema. Mine is a result from breast cancer 6 1/2 years ago….in my right arm. I used to try and hide my arm but I decided this is who I am. Acceptance is the key to happiness.

    Like

    • Allyson Hannah · October 12, 2015

      Hi Teresa, thanks for reading. Acceptance is key 🙂

      Like

    • Katie ogilvie · November 21, 2015

      Me too! Right arm from breast cancer in 2008. I wear a compression sleeve every day – i’m a high school teacher and when the kids ask, I tell them I used to work in the circus and there was an incident with a lion/trapeeze/tattoo – wherever the mood takes me! I’m having lymph node transfer surgery on Wednesday – there is hope – research is moving treatments forward all the time!

      Like

  3. jill donovan maio · September 2, 2015

    hi.I was diagnosed with with what was then called Milroy’s Disease, Lymphadema Praecox, and started wearing a compression stocking on my swollen right foot, calf, and ankle when i was in 7th grade, 54 years ago. (they were thick and ugly). i remember how hard it was.I felt very self-conscious. my mother also made me wear saddle shoes and white anklets to protect my feet… i rebelled. i had tennis shoes in my locker that i changed to when i got to school. and i often took off the stocking and put that in the locker. i only did some of what i was suppose to. But after I had bouts of cellulitis, I made the changes I had to make to take care of myself. I wrapped. I wore the stockings, i found sensible shoes that were much more attractive, wore tights often and knee socks (no pants at school then). it was just fine. no one cared. i had lots of friends, even some of the coolest girls, and i had boyfriends. there are so many things that you can do and get involved in that you will find plenty of friends around the activities and subjects you most enjoy. my friends knew about the leg but we rarely talked about it-it was a condition I managed. and there were some things i couldn’t do. but that was okay. there were a million more things that I could do. You have the right attitude.
    It is hard. Chronic illness makes us different than most of the people we know. And we have to accept that this is the body we have this life and we just have to make the best of it. I’m still active and have had a good life-not without it’s difficulties-and continue to adapt my life to my physical problems. (now that I’m 66, many of my friends now have chronic illnesses and have a new understanding of what i’ve dealt with all my life. they could not really understand what they had not experienced personally.) You’ll do great. Enjoy soaking up information-learn as much as you can from your teachers. try new activities, be curious and look for good people who are wise and will make you laugh. and lay down. put your leg up. and read a really good book in silence. i’m full of advise if you want it.

    Like

    • Allyson Hannah · October 12, 2015

      Hi Jill, thanks for this 🙂 Being more open about lymphedema has gotten so much easier as I have gotten older. My friends are so supportive and most people don’t even notice. I know what you mean about chronic illness making you different from most people. Because I cannot do all the active things I would like I have put more effort into learning and have found a great passion in helping others. Having lymphedema has helped build my character and I am thankful for that. I always wonder what life will be like with lymphedema as I grow older so this is great to hear. Please keep in touch!

      Like

    • jill donovan maio · March 17, 2016

      I’ve never talked with anyone else who has this-so i don’t know how unique my situation is. I would love to talk with you anytime. are you in a chat group? i am not, but would be interested in talking to others.

      Like

  4. jill donovan maio · September 2, 2015

    i j reread Allyson’s statement, and for some reason thought she was going to school and much younger, but just noticed she took a month off work, so I addressed a much younger person. I am sorry. Moderator, please delete. this is such a good forum. i hope it helps lots of people.

    Like

    • Allyson Hannah · October 12, 2015

      No worries Jill! I am in college so everything you said still makes sense 🙂

      Like

  5. helensamia · September 3, 2015

    Reblogged this on My Lymph Node Transplant and commented:
    A must read … Thank you for sharing

    Like

  6. zebrahouses · September 3, 2015

    Dear Allyson; Please, Oh Please, keep on writing. You have a wonderful voice.
    I have had lymphedema for over 40 years now, and I consider it one of the best things that ever happened to me. It separated me from the herd. At the age of 15, I realized that I would never be “pretty”, so I had better work on my personality and intelligence. What a relief to not have to worry about what people were thinking about me.
    Good luck to you. I’ll be back to read more.
    Laura

    Like

    • Allyson Hannah · October 12, 2015

      Thank you for reading Laura. I look forward to hearing more from you 🙂

      Like

  7. Pam Donkin · September 3, 2015

    This made me tear up because I completely understand as I’ve been there and done all that. I am still learning to accept and include.

    Like

    • Allyson Hannah · October 12, 2015

      Hi Pam, it’s comforting to know I am not the only one who has felt this way. Thank you so much for reading.

      Like

  8. rexnjballen · September 3, 2015

    Beautiful commentary

    Like

  9. Debbie · September 3, 2015

    YES WE ARE!!!!!!

    Like

  10. taoharps · September 4, 2015

    One day, looking at my feet (I have lymphedema in both legs), I suddenly thought of where I had seen such feet in art… R. Crumb’s comics. Ha! Wild, bawdy, broad-humored R. Crumb, the counter-culture artist who first became famous in the sixties for his album covers for Big Brother & the Holding Company and the Grateful Dead.This actually helped me… you don’t necessarily have to see imperfection or flaws, just recognize there are different views of what is beautiful. This condition has nothing to do with making you beautiful; you do that yourself.

    Like

  11. Lisa Masterson · September 8, 2015

    Thanks for telling your story! We have alot in common! I have the same thing in my left leg! One thing thou, my leg is so big that I can’t wear a sock! But at least I can walk, and I’m grateful for that. Thank you for sharing your story!

    Like

    • Allyson Hannah · October 12, 2015

      Hi Lisa, have you been able to do any treatment or wraps? That may help a lot if you are able to take time to do that. Stay in touch!
      – Allyson

      Like

  12. babsbnz2 · September 28, 2015

    I just discovered your blog. I, too, have lymphodema in my left leg from a foot injury about 10 years ago. No pain, no serious complications. I wear a custom stockings g and have a Lympha Press massage machine which is great, but the results don’t last long! I’ve been told about a lymph gland transplant and/or by-pass procedure. I’m considering it….but find it frightening and maybe too much?
    Any comments would be appreciated!!

    Like

    • Allyson Hannah · October 13, 2015

      Hello! I have not looked into the lymph gland transplant too much but my parents have been following the research. I know it has gotten a lot more reliable then it used to be and I have thought about doing it in a few years when I am out of school. Do you get newsletters from the National Lymphedema Network? In their last newsletter they had some case studies. Let me know if you have any other questions!

      Like

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