No Its not Cancer it's Alopecia

I consider myself blessed, yes blessed.  Some of you after reading this might not agree; but looking at it in a different perspective you can see what I mean.  I have alopecia universalis; this means that I have an autoimmune disease that has robbed me of my hair.  And choosing to live my life as a “fabulous” bald woman without head covering, a lot of times it is assumed that I have cancer and going through chemotherapy.  A lot of alopecians hate this assumption and there were days where I too thought this.  But lately my thoughts on this have changed. 
I look at it from another perspective, most people that come up to me asking if I’m going through cancer treatments want to relate and share their stories.  They are entrusting me with their story, hoping that I can relate.  Well the truth of that is; No I can’t relate to fighting for my survival with a horrible disease.  But I can listen, I can sympathise (even if I can’t empathise) and the one thing I have learned in my own alopecia journey is that having someone to listen to you, that might be able to relate, to understand..... Is HUGE.  And with listening and sympathising comes an even bigger responsibility to treat their story with respect and dignity.  Just like I wanted and still want my story to be treated as such. 
Working in a customer service oriented business I get the chance to frequently mingle with the guests.  And every once in a while I meet a guest that impacts me.  Like today; I had a guest ask me if I was going through cancer treatments and if that was why I was bald.  When I responded “No its Alopecia” He was curious enough to ask me about what that was.  When I finished explaining what the disease is, he told me that his daughter had leukemia.  She survived her battle and went on to live a strong life.  In fact, as her father related to me, later when she remission for a number of years she met a man and decided to get married but only after the doctor gave her the “cancer is gone” diagnosis.  She and her fiancé got married in Las Vegas.  I thanked him for sharing this story and congratulated them all.  This father was so proud of his daughter and all that she went through that he wanted to share her story and her victory and I was the opening that he needed to do just that. 
Last week I was also given the opportunity to listen to another’s story.  And this is a story that greatly affected me and still does.  This senior gentleman had come up to me and kindly asked if I was going through treatments.  He told me that he is about to start treatments and even though he went to a support group of other cancer fighters, he couldn’t bring himself to ask all the questions he had.  But he did ask me.  I answered what I could, but also told him never be shy or nervous to ask questions. 
This is where I have changed my perspective on these matters.  We all look to someone that can possibly relate to our own journey.  And with a journey such as cancer, or for that matter any journey that changes you,  we all want that “I’m not alone” feeling, and connection.  We want to reach out and “pay it forward” To help others, to be there like others have been for us, to impact and touch others.  It’s a small community of those that have fought, struggled and battled our way here.  Either for our lives literally or figuratively and we want to pass on that message of “You are not in this alone” If we allow it, it changes us at our soul, our essence of who we are. ”  When I told that senior gentleman to never be shy or nervous to ask questions, because your questions will not only give you the answers you crave but by answering those questions, by opening up and sharing their story it’s just as healing to them as it is to you.


 Why am I honoured to hear these stories?  Because I have no hair?  Because they recognise a similar battle?  Whatever the reason I feel blessed that I have been included to be a part of the story.  To leave my footprint.  To be able to say “Its ok, you are not alone.”

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