Hi! My name is Amel, I am 39 years old, and I have Primary Lymphedema. I am French and live with my Partner. I work in a paediatric hospital and I am in charge of an atypical drop-in centre: we welcome the brothers and sisters of hospitalised children. I am very involved in my work because our department participates in the improvement of the patients in the hospital and we give the children a space of play, which aims to let kids be kids and forget about their illness for a moment in time.
I have always been very proud of my legs, especially my ankles that were very fine. But I sometimes had the sensation of heavy legs. So, at 28, I went to see my doctor. After a diagnosis of venous insufficiency, the doctor ordered me to wear class 1 compression stockings. I wore them for a few days but they were very uncomfortable so I quickly threw them away. Ten years later, at 38 years old, I discovered a rare disease called Primary Lymphoedema Tarda and my class 3 compression stockings have never left my leg since then!
My swelling started after a sports session- I had edema in my groin and it was diagnosed as inguinal hernia (very rare in women). During the 3 years that followed, the problems evolved: my leg began to swell from time to time at the beginning, then in a chronic way until it no longer deflated. I was athletic, I paid attention to my diet; To my body. In response, my body dysfunctioned to become something hideous: a leg like an elephant’s foot.
I consulted 2 GPs; 2 angiologists; 2 osteopaths; An endocrinologist.
I had three doppler ultrasounds; 3 ultrasounds; 1 scanner.
I cried a lot of tears and lost hope one thousand times over.
For 3 years I undertook all these examinations and still had no diagnosis of my swelling- except the doppler ultrasound which concluded I had a very good venous return, but a moderate edema of lymphatic origin. The doctors told me that we could not do anything and that throughout the years it was going to continue to swell, that’s all! Also that I had to wear stockings all the time, for the rest of my life. My friends and family did not understand either, and minimised my troubles as being ‘not serious’. I blamed myself for dramatizing something apparently unimportant. Every day, at work, I rub shoulders with the disease, some very serious, others mortal, so my small problem of swelling of the leg felt silly.
But I was alone in carrying my burden, alone to suffer, alone to feel the skin pull; To suffer through pain and to see the deformity of my leg. My body no longer belonged to me; it became something I did not recognise or connect with.
Seeing my despair, one of the doctors gave me an address of a medical centre as a last resort. I didn’t have much hope but I went to the Cognac-Jay Hospital in Paris, which specialises in lymphatic diseases. I passed an examination again: a lymphoscintigraphy and a few months later, the final diagnosis was implacable: Primary Lymphedema.
After days filled with anger, misunderstanding, injustice, sadness, I finally went to the hospital for intensive physiotherapy. The nursing staff treated me well; they welcomed my tears; they taught me to take charge of myself; to understand the disease and tried by all means to instill a diet of life: to live normally !!!
The doctor who treated me also said these words that greatly impacted my life: “Now you are being looked after, with us.” She had put an end to my wandering diagnostic search. I was no longer alone and the speech was different from anything I had heard previously: “You can do something to regulate and reduce lymphedema. ”
But I discovered myself with a handicap, it was so new. I was watching all those people who were walking in Paris in the middle of July 2016 with the carefree summer, bare legs enjoying the heat … How could one suffer so much; Being recognized so little ?
That’s what made me “Chronically Motivated”: living with purpose, to actively exist and no longer be ashamed or feel like a monster with a freaky leg. Refusing to not have a proper diagnosis; refusing to not taking care of myself; actively seraching information; to find real answers and hope!
My history with lymphedema is like a process; A long journey through different stages, intersecting, backtracking (denial, believing one day that I was going to heal, despair, stopping care), making progress (motivating oneself, not letting go; Never give up; fighting and continuing to care.
My family supports me they know how hard it has been for me. It is their interest in my illness that gives me strength. Then there is one who loves me for who I am- my Partner. He encourages me to take care of myself; to not be obsessed; to not pay attention to others; even if I look like a mummy !!!!
Finally, I discovered Instagram and the lymph community. I was impressed how a social network could smartly support people who felt isolated. I saw so many women living the same story as myself, sharing advice, their progress and daring to show themselves.
Chronically motivated for me is a journey of doubts, questions, vivid emotions but also progressive advances; Hope and positively combating: to act and to carry within oneself the solutions of their personal health.
I continue to work normally as I believe it’s important to have my life. I have the ability to adapt even if sometimes it’s hard and I get discouraged because I’m tired after a hard day’s work. Every day is a challenge- but a joy to live!
Through this testimony, I hope to participate in a space of words; exchanges; experiences and sharing. Knowing that others have read this reassures me and gives hope: it is possible to take care of and to continue living and not to feel isolated, or ashamed of being what we are.
During my hospitalization, the caregivers always told me “to continue living normally” but LE does change our life and forces us to be more creative in our living. From a normal life to having an extra-normal life !!!!!
Here is my top 3 things that I can’t live without: my compression stockings, my bandages and my moisturizer.
What I discovered to treat my LE: swimming that allows lymphatic drainage and dramatically reduces edema. And I discovered that wearing a class 2 stocking under a class 3 stocking reduces edema.
This testimony has been translated from an original french version. To read the french version click here.
Where you can find Amel: