The following was submitted by Monique Samuels (@chronicallymoni):
What has your experience been with lymphedema?
At the time I am writing this I will have lived with lymphedema for 22 years. It blows my mind to think of that 12 year old version of myself devastated, hopeless and lonely. When my lymphedema developed I was at the cusp of being a teenager, preoccupied with what other people thought of me, how I looked what boys would think. I was still learning who I was in the world.
When my lymphedema developed I was at the cusp of being a teenager, preoccupied with what other people thought of me, how I looked what boys would think. I was still learning who I was in the world.– Monique Samuels
It all started with a simple field trip to a skating ring. I somehow sprained my right ankle that day, a few weeks later my right leg started to have pitting edema, then a few months later my left leg started to swell as well. I went to several hospitals in the New York area; it took a resident doctor in the emergency department to suggest a diagnosis of Lymphedema. He suggested I go to the Learner Lymphedema Center in NYC. The next week my mother took me and I was officially diagnosed with Primary Lymphedema.
I have primary lymphedema in both my legs. I was able to manage it for many years; it was hard and time consuming, but I was able to manage it since I was a child and had little to no responsibility outside of homework and helping around the house.
I hid myself. I quit doing a lot of the things I loved to do. I was a swimmer, I quit swimming. I was in the marching band, I quit marching. I did dance, I quit dancing. I didn’t want to be seen, and I did not want people to ask me questions. I was embarrassed and had no one else who looked like me or was my age to show it could be normal, that it would be okay.
I was embarrassed and had no one else who looked like me or was my age to show it could be normal, that it would be okay.– Monique Samuels
As time went on, I transitioned to college. I was trying to find out who I was a person and also wanting to lead a normal life without lymphedema. I stopped wrapping my legs, wearing my compression garments, going to MLD therapy. My legs got so big I could barely walk. I developed cellulitis; I would have 10 episodes of it on average in a year.
I got sick and tired of being sick and tired. So I decided to take action. I started back doing therapy (thank God for health benefits). I started doing my own research to see if there was any new information on lymphedema. Honestly, there was not much. For years I heard no surgery would help; there was no research anyone I had contact with could interpret or recommend to me.
I was doing therapy, but my legs would get back to where they were in no time. It takes so long to get my garments after therapy, and each fitting during that time if I had garments, they were old and ill fitting, or I had none I could wear. My swell rate is very fast, so it was a circular frustrating process.
I found a surgeon who could help cut off skin and tissue that had over grown on my legs to help me get as close to normal shaped leg and eliminate the extra pocket for lymphatic fluid to fill.
Living with lymphedema, I never see anyone that looks like me represented in anything. So I created my own space to share with everyone who has lymphedema and any chronic disorder that life can be happy and joyous.
Living with lymphedema, I never see anyone that looks like me represented in anything. So I created my own space to share with everyone who has lymphedema and any chronic disorder that life can be happy and joyous.– Monique Samuels
I created a YouTube channel Chronicallymoni to share my story and how I manage life with lymphedema. I share how I had to be my own advocate for my health and do my own research to get the care I know I needed.
I have come to learn that living with lymphedema does not have to be a burden. I had to choose happiness and I had to make changes on how I saw myself and how I show up in the world. I appreciate the lessons having lymphedema has taught me. I am a better human being for it.
I appreciate the lessons having lymphedema has taught me. I am a better human being for it.– Monique Samuels
How do you feel about the lymphedema community? Are there any areas that need improvement?
The lymphedema community really doesn’t shine light on teens and young adults, people who did not acquire via complications of cancer.
Lymphedema costs are so high. No one talks about the ongoing maintenance that is needed and how much that costs.