Tuesday, December 14, 2010

I Am Not Ashamed Anymore

When my husband and I got married in 2001 I dragged that poor 25 year-old man/boy kicking and screaming into wedded bliss. One of my more effective tortures was to send out a holiday picture and "update" letter every year. At first he thought it was the lamest thing ever, but eventually he started having fun with it. One year we were at the bottom of Lombard Street (the twisty and turney one in San Francisco), another year we were on the beach, the three of us silhouetted by the tumultuous ocean and blazing sunset. Most years it is just a head shot with Yorkie and maybe the Christmas tree behind us, the years I look good, that is. The letters stopped in 2005 when I got sick. I had no idea how to send out a cheerful and upbeat update telling our friends and family that I had some strange mystery illness no one really took seriously. Instead of vacations and trips our exploits consisted of MRI's and CT's and FMLA and disability. I did not know what to say, felt I would have had to explain too much, did not really know how to explain it, for CFS & Fibromyalgia still confused the hell out of me! I was not going to write a pity letter but there was nothing else to write about, for my illnesses consumed me.

I was ashamed. I did not want the world to know because of those that did know, many had judged me harshly. I was still walking through my many stages of grief and had yet to come to terms with my reality, my diagnosis. In the back of my mind I doubted this diagnosis of exclusion, Chronic Fatigue Syndrome and Fibromyalgia, until I saw the blood test results from The Fibromyalgia & Fatigue Center and Stanford Hospital and underwent serious viral suppressive therapy, recovering from CFS. Even then I was private, quiet about my reality because I was left with some strange pain syndrome that annihilated my ability to live a normal life but was nothing most had ever heard of. Something few understood. So I remained hidden behind the cheerful facade of a smiling happy family photo and silence. But this year something is brewing, something is bubbling to the surface...

Something inside me broke when I had those strokes in July. Maybe I am just old enough now to be comfortable with myself, confident in who I am, I don't know. But what I do know is that I am no longer content to be quite about what I have. Going public with my blog and starting a support site, naming myself the leader of The Fibromyalgia Crusade and marching full speed ahead into Fibromyalgia awareness has sparked a responsibility in me. I will be sending a letter this year, for the first time in 5 years. I am going to tell all my friends and family, with pride and dignity, what our family has been through for the last 5 years. I am going to invite them to check out the website and learn a little bit about what we are doing to raise awareness. I am going to end the ashamed silence I have lived in for the last 5 years. I am not ashamed anymore, nor am I confused. I am as clear in mind and soul as I have ever been. Besides, I have a new daughter to introduce...

Thanks for joining,


  1. Leah, thank you for writing this blog. I feel like you do but I am still in denial that I have fibromyalgia and like you said it is something you just can not explain to your friends and family and you get judged so harshly by everyone, so, I do not think I am there just yet. Maybe soon though.

  2. Good for you! I so know what it is like to be judged and so sticking your head back in the proverbial shell. I get it not just from strangers, and friends, but my own Dad and one of my daughters as well. It is hard when no one can see it or feel it etc etc ...I have been out, telling others for a few years now and not apologizing..and it is liberating..even if it still hurts emotionally when others still don't get it or can not deal with the bad days I might have and walk away...it is important to talk about it. So I applaud you !