My Life with Lymphedema
To watch me deliver this talk, click here.
On June 6, 2023, my life changed when I was diagnosed with lymphedema. If you don’t know what lymphedema is – I didn’t – it’s excessive swelling caused by the buildup of lymphatic fluid somewhere in the body. My lymphedema manifested itself -- out of nowhere – in my left foot. It impacts my foot, my toes, my ankle, and my lower leg. There is no cure for lymphedema. Although lymphedema is not a life-threatening condition, it is a life-altering one and it requires extensive daily management.
Because it’s a chronic condition, the best way to manage it is by wearing compression. Every day, I wear a toe cap that covers my toes and runs halfway up my foot; a tight stockinette; six pieces of foam – of three different shapes and sizes – tucked under the stockinette around my ankle to compress the swelling; a layer of Mobi-derm foam to press on the top of my foot; and a piece of channeled foam wrapped around my ankle. I keep this all in place by wrapping two stretchy bandages in a herringbone pattern from the base of my toes to just under my knee. I wear all this every day, for 22 hours a day, for the rest of my life.
The only shoes that fit with all of those foams and wraps are slippers or a pair of cushy, wide-buckled sandals. For a day when I need to wear other shoes, I instead wear one of my custom compression socks. The sock doesn’t control the swelling as well, but it allows me to squeeze my foot and leg into boots or sneakers, all of which I’ve replaced with shoes one size larger than normal. I can no longer wear high heels and actually really miss them.
When I was wrapping my brain around all this last summer, I was on an emotional rollercoaster. I was confused as to how this could happen out of nowhere; I was in denial that there was no cure; I was angry, frustrated, and sad. But no matter how I felt, I never allowed myself to cry. I always stopped myself short. I felt that lymphedema had taken so much from me physically and mentally that I wouldn’t give it my tears too. I thought that if I cried, it would mean that lymphedema was managing me rather than me managing lymphedema.
In late August, I confided in my friend Jen Grosso about everything that was going on. She listened, paused, and then said: “No one is going to give you a gold star for not crying. No one is going to give you a gold star for bottling up your emotions. You need to let some of that out.” Jen, like me, is a Type A former litigator, so her point was well-taken. But I didn’t do anything with her advice… until I lost a contact lens.
On a typical day, that’s simply a costly mistake because I wear custom lenses. But that day, it was the straw that broke the camel’s back. The floodgates opened. I absolutely lost it. When my husband came in the bathroom to see what was going on and I told him, I also said: “It’s not about the contact lens.” He said: “I know.”
That breakdown is the breakthrough that I want to share today: allow yourself to fall apart. Allow yourself to feel all the feels, without judgment or expectations and simply by giving yourself the grace to feel. Those tears, and all the ones I’ve cried since then, were a critical component of my healing journey – one that I am very much still on.
Those tears allowed me to grieve. I had to grieve my old normal in order to accept my new normal of constant compression, not to mention the daily physical therapy. Those tears allowed me to mourn what my leg, foot, toes, and ankle used to look like, but more importantly, what they used to feel like when they weren’t constantly swollen and when I could stand for more than 10 minutes without feeling the lymphatic fluid drain my leg, get achy, force me to sit down.
Those tears – and all the emotions I feel – are what allow me to turn my “mess into my message” about feeling all the feels. In fact, I had never spoken publicly about living with lymphedema until February 19, 2024, for an attorney wellness invite for the New Jersey State Bar Association. (The ask? Answer the question: “What helped when you fell apart?”) Thank you to Jeralyn Lawrence for inviting me to participate in that transformative day. Sharing my story and hearing all the other speakers’ stories empowers me – and everyone else – to OWN their story.
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