Learning to Accept My Lymphedema

Ok, I've got a big reveal today - at least for those of you who don't know me personally. I'm a Lymphedema Therapist living with primary Lymphedema. My own experience of difficulty getting a proper diagnosis and treatment is what compels me to continue to learn as much as I can about the effective care and management of the symptoms of  Lymphedema. But behind that grand statement is a story, one that bares more than a few similarities to many of the people I treat.

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I was in my early 20s – a time in my life when I was very preoccupied with fitting in and being ‘normal’ like everyone else - when the first signs of Lymphedema started in my left foot. They came on soon after a day spent playing baseball with friends. At some point as I rounded the bases, I felt something in my ankle 'pop.' It wasn't loud or particularly painful, but it did feel a bit off. I kept playing despite the weird feeling and when I woke up the next morning there was noticeable swelling in my foot. When the swelling didn't subside after 2 weeks, my very wise mom (who also happens to be a nurse) demanded that I see doctor. I ended up in emergency late one night, where they gave me an X-ray to see if something else was going on. Though I distinctly remember my emergency doctor who saw me being as sweet as pie, he was the first in a series of physicians who gave the following advice (or some close facsimile):

"Nothing is wrong with you and the swelling will probably go away on its own over time. If not, you'll just have to learn to live with it."

As a result, I simply went on with my life, doing my utmost to will the swelling in my foot - which at the time was very light (virtually unnoticeable to anyone but my panicked mother and me) - away. So, between visits to vascular surgeons, internists and even an acupuncturist or two (yes, I actually let someone stick needles into my affected leg! I can't believe it now either, trust) for the better part of 11 years I lived my life as I always had. Then only exception being, the need to hide my 'problem foot' - which over time slowly became my 'problem foot, ankle and lower calf' - under my clothes and in increasingly clunky foot wear.

Lucky for me, my case of LE is not severe and didn't fair too badly despite the years of negligence. Outside feeling sorry for myself because I could no longer wear 'pretty shoes' and suffering though a wave of embarrassment when anyone called attention to my 'problem', I lived my normal active and fast-paced life. Coming to terms with the fact that I had a medical condition (despite what doctors were telling me) that had forever change my life was not something I was willing face.

These are my legs first thing in the morning. It's been pretty hot in Toronto for the last few weeks, so despite wearing my compression garment consistently and massaging A LOT, you can easily spot the swelling in my left foot ankle and calf these days.

As a result, it wasn’t till my mid-30s that I finally decided getting a proper diagnosis and treatment were absolute musts. By then even with my well honed powers of denial I couldn't help but notice how severe the pitting edema in my foot had become. I'm a bit fuzzy on the details of what happened next, but somehow I got connected with Pam Hammond, a well-known Lymphedema therapist here in Toronto. Pam made sure I went to a doctor who would properly diagnose me; connected me with certified fitter, Tammy Jeffrey (who to this day is my hero for somehow drilling into my thick skull the importance of wearing my stocking every day!) to get the compression garments I needed; and reduced my symptoms with regular Manual Lymph Drainage  treatments. She also took the time to teach me how to manage my symptoms on my own, educating me on how to bandage my leg and the very basics of MLD treatment.

I'm not sure if it was finally having a name for what was happening to my body or seeing the level of concern both Tammy and Pam had for me that shifted my thinking, but something finally clicked. I 'suddenly' became very focused on my own self-care. To reduce the size of my affected leg, for the first year after my diagnosis, I bandaged my leg every night, wore my compression stockings religiously (as I do to this day) and was even more vigilant about my skin care. The result? The swelling in my leg went down dramatically and outside of a bout of cellulitis in 2010 (cuts are a big deal for those of us living with Lymphedema, people. Handle them very carefully) my symptoms have been well controlled ever since.
 
Now, I totally get that taking steps to effectively manage my symptoms each day of my life is my very own new normal. Is it glamorous? No. Does it suck to have to wear compression garments day after day after day? Though I’ve gotten used to it and honestly can’t imagine not wearing them anymore, absolutely! But I have learned to accept that this is the state of my life. A wonderful life that:
 

• Allows me relate to the experience of my Lymphedema clients. Though I can’t argue that it makes me a better therapist, I know that there have been times when being able to say "I have it too. I’ve been there and know how you feel" has made the person lying on my massage table feel a little less alone.
• Has made me a vocal and determined advocate for self-care. I'm not ashamed to say that I spend a great deal of my time gently nudging, pleading and/or begging clients (who are often just as reluctant as I once was to acknowledge the seriousness of their condition) to do all they can to take care of the affected limb in between treatments. Also, in tougher cases and only when absolutely necessary, I'm able to pull out my "Don't make the same mistakes I did" card to drive the point home.
• Pushes me to learn all I can about treating Lymphedema. I'm fairly certain that I wouldn't have ended up becoming a CDT if I hadn't developed Lymphedema myself. Though if I'd been given the choice, I wouldn't have chosen to live with it, I still consider myself lucky, because I truly love the work I do. Serving the people I work with to the best of my ability makes me feel good, because I know I'm making a real difference in the lives of the people I work with. 

 
Learning to accept my own status as a person living with Lymphedema has empowered me in many ways. It put me in the headspace to take charge of my health and encouraged me to learn more about the condition, which ultimately lead to me becoming an Lymphedema therapist.  Now, after years in the field, I can honestly say I feel honoured to count myself among the Pam Hammonds and Tammy Jeffreys of the world, who help make the lives of individuals living with LE just a little bit easier, every day. So...
 
Here's to all the experiences that my 'problem leg' has brought into my life and accepting whatever else may come my way.
 
B