May 2019

Motherly Advice: Living with Lymphedema & Lipedema

Pattie Cornute, Amy Rivera and Amanda Sobey

Every now and then, we can all use some motherly advice, especially when learning to cope with having Lymphedema and/or Lipedema. Being a mother with these conditions creates additional obstacles – physically keeping up with your kids; helping your kids understand your condition; and being mindful of your own body image and how your children perceive that. In honor of Mother’s Day, Pattie, Amy and Amanda share what they’ve learned from living with these diseases and offer advice to other parents.

“Never give up; never surrender.” Lessons learned from Pattie.
I had Lipedema before Noelle, who is 15, was born. I just didn’t know it. My symptoms spiked after her birth, which is what eventually led to my diagnosis. Noelle has always known me as having Lipedema/Lymphedema, and the earliest “discussion” I had with her about it was probably when she heard my husband, Bob, and I present at the FDRS Conference in 2014. The presentation was about my journey with Lipedema, and how training with Bob changed my life.

The possibility that I could pass Lipedema on to Noelle was frightening at first, especially as a new mother. I was newly diagnosed and overwhelmed with the realization that nothing much had happened in the Lipedema world since it was first diagnosed in 1940. I would check her ankles and legs to see if I could notice any changes, and the fear of “what if” played into the depression I was experiencing at the time.

After my diagnosis, the doctor told me not to exercise and to limit my physical activity. It was heartbreaking. As I watched my world (my husband and daughter) carrying on without me, because I was physically unable to participate, I mourned my life, and feared for it also. I don’t know if I can verbally get across how scared I was, how helpless I felt. By listening to that advice, out of fear for making my condition worse, I got worse. I lost almost all my mobility, and my body hurt all the time. The body needs to be active, especially our lymph system. It needs the movement to function. I finally said enough – enough listening to others about what is best for me. It was time to do something, anything, that might help. I asked my husband (who was teaching a weekly CrossFit class) what the workout of the day was and how could I do it with my limited abilities. He had me start with a modified version of the warm-up. The action of doing something helped me so much emotionally. I was taking action. I was doing something. I was fighting back. My biggest advice (excuse me while I quote one of my favorite movies, Galaxy Quest), “Never give up; never surrender.”

As I began to take back my life physically, I also got a huge lift emotionally. I realized even if Noelle does have Lipedema, we have come so far in the years since my diagnosis. We know so much more now than we did back then, so why fear something that “might” happen? We will cross that bridge, if we come to it. I have no control over this, so stressing about it is not an option, and stress is a big trigger for my Lipedema symptoms.

Body confidence is a big deal and especially hard when our condition really changes our shape, but the positive body movement is awesome! I joined fat fitness groups, and fat fashion groups, and slowly started to change my perception of my body. Instead of being angry at it, or hating how it looked, I started to thank my body, and appreciate its strength – appreciate how far it had come, from where it had been. I became mindful of how I talked about my body, because my ears were not the only ones listening. I remembered a workshop I had attended years before, the workshop leader asked, “What would you do if you overheard someone talking to a 2 year old, the way you talk about yourself?” I started to cry, as my daughter at the time was a 2 year old. I knew there was no way I would sit by and let someone talk to her the way I had been talking about myself. We fight daily just to stay mobile. I guess when I nearly lost my ability to walk, my mindset changed in regards to my appearance. I’m just so grateful to be able to move again. I try to lead by example. Hopefully Noelle sees me continuing to live my life, trying new things, and she sees that the shape of my body is not stopping me from living life to the fullest.

The best advice I have for parents with Lymphedema/Lipedema is to start with you. What life do you want to lead? Find a way to do so. It might not look exactly like what you envisioned, but find a way to do what makes you happy. Seeing you happy will do so much for your children. They grow up in the blink of an eye, so spend every possible moment you can with them. Laugh with them, and enjoy the journey with them.

Learn more about Pattie’s journey.

“Make the world hear you, see you and respect you.” Amy’s encouragement.
My daughter Jade is 18. She grew up seeing me with a large leg, but we didn't have the actual conversation about LE until I was diagnosed in 2013. I have always kept a positive attitude about it in all of our conversations, so when it was time to talk to her about her own lymphedema/lipedema it wasn't as heartbreaking as you would think it would be. I prepared her by being that positive role model. When she was diagnosed two years ago, she looked at me and said, "Thank God for you".

I don't fear much about Jade having lymphedema, other than her ability to stay compliant. She wants to be a "normal" teenager – the same thing I wanted, but the reality is she was born to be GREAT, not NORMAL. With greatness comes the price of not experiencing some of the "normal" things in life. I fear that this will hurt her if she doesn't understand this concept and find peace with the disease and use it as a tool to reach others by being compliant.

Jade talks about having surgery and mentions areas of her body she doesn't like. I try to encourage her by introducing her to others who have this disease and are confident with themselves. I can (and do) tell her everyday how beautiful she is, but I'm her mother. I introduce her to people she will connect with and listen to them. Having positive peers in her life with lymphedema/lipedema helps her see herself in a positive light rather than what is on social media, which is fake 90 percent of the time and as she gets older, she sees that.

I tell parents with lymphedema/lipedema first and foremost; don't be sad. If you are sad, your kids will be sad. If you are angry, they are angry. If you have a negative mindset, they might not be sure how to feel. Of course, lymphedema can suck on so many levels, but it is also a beautiful thing. It allows us to see life in a different perspective, and we understand humanity—which is lacking more and more in this world every day. You may not understand my way of thinking, but it sure beats being depressed, sad and angry at a world that doesn't care. So…be that voice for those who don't have one and make the world hear you, see you and respect you rather than kick you down.

Find out how Amy became the Lymphedema Ninja.

“Try doing it the way your mom told you…” Advice from Amanda
My sons are 11 and 13. I had Lymphedema before they were born. My kids love me for who I am and never noticed or concerned themselves with my medical condition. I did not let my Lymphedema get in the way of being a mindful parent, as I always participated in their activities like swimming, playing, etc. If anything, my kids learned about my Lymphedema when others asked, "What is wrong with your leg?" I would kindly educate them on Lymphedema and provide information about the condition. Children are natural born learners, so they absorbed everything I said.

Being a single, full-time parent has many challenges. I learned to adapt and balance my time accordingly. This took years of trial and error: when the boys were young they required a lot more one-on-one care. Now, they are a lot more self-sufficient. The biggest factor that helped me was to put myself on the list. I had to make myself a priority. Firstly, I knew exercise was important, so I would incorporate physical activities into our daily routine. Being active together was beneficial for all of us in more ways than one. Secondly, my kids and I have a love for food. I cook homemade meals almost every day. I taught my kids to have respect for food in a healthy way and am very proud to say that they are amazing cooks.

My biggest piece of advice for other mothers with lymphedema is to not be so hard on themselves. I am terrible at taking my own advice and try to get better at this. My kids love me for who I am and not for the disease I have. If I let the disease control me, mentally and physically, I will ultimately be a victim. My children want what's best for me and I have to embrace that. The best thing I can do for my kids is lead by example. By showing them how I treat and respect my mind and body with values, discipline and good decisions will impact them far greater than anything else.

As a parent, I can honestly say that I learned more from my kids that I care to admit. I would catch myself saying to them, "Be strong. Make good decisions. Go outside and get some fresh air. Find yourself something better to eat instead of that garbage." It's funny how I expect my kids to listen to me. I didn't really have a choice in the matter other than taking my own advice. As the old saying goes, "If at first you don't succeed, try doing it the way your mom told you in the beginning.”

Read Amanda’s inspiring story of “getting back to healthy” after her diagnosis.