Validation: Alliance for Cryo Secret Support Group

secret alliance

Validation is Strength

I am a why person. When faced with a challenge knowing ‘why’ makes it easier to meet that challenge even if the ‘why’ doesn’t come with a solution. When I was diagnosed with Cryoglobulinemia, that diagnosis became an exception to my rule and left me with a million more unanswered ‘whys’ and no solutions to my many health issues.  The label Cryoglobulinemia came with only one warning: Stay Warm!  My doctor also, told me that cryo had the potential to cause harm in every system of my body and to every organ but he had no idea if it was the underlying cause of my many mysterious health issues or my constant pain. My new diagnosis left me in a state of unknowing fear and dissociation as to why I felt so bad. Even the warning to stay warm was not enough information because staying warm with Cryoglobulinemia is very different from the average idea of staying warm. I was left on my own to become proactive in understanding my rare disease and learning how to take care of myself. Over ten years later, I am still pretty much on my own and still searching for a doctor willing to learn about Cryoglobulinemia.

I have sometimes been criticized for my insatiable quest after the ‘whys’ in life but if it weren’t for that desire, I know I wouldn’t be doing as well as I am and I quite possibly, wouldn’t be alive. Knowledge is power and understanding Cryoglobulinemia is essential for survival. Being frustrated by my doctor’s lack of knowledge sent me digging for information on my own and I soon found that there was very little good information to be found. What I did find was a repeat of basically, three paragraphs that gave me little to no insight into whether my signs and symptoms were related to Cryoglobulinemia or not. The help and information I needed came when I found an online support group and began comparing notes with fellow Cryoglobulinemia sufferers. I met Eileen Propp and she became not only, a source of understanding and emotional support but she gave me the information I needed to associate my symptoms with my autoimmune disease and learn how to be proactive in caring for myself. Others in that group also offered me life improving insights and the mental/emotional relief that comes with greater understanding. Many years later, Eileen and the members of Alliance for Cryoglobulinemia Secret Support Group members remain as my main source for the information I need to understand my disease. Even now as an un-wanting veteran of Cryoglobulinemia, I would be lost without the strength of validation that I can find only in my fellow Cryoglobulinemia fighters. It isn’t easy to share personal health struggles and it should never be demanded of anyone to do so but I’m very grateful for all who do choose to share. Validation is a sacrificial gift and to all those who have sacrificed to reveal their personal stories, daily struggle with Cryoglobulinemia, I want to say thank you for giving of yourself. You are my heroes and I am forever grateful. In you I have found some answers to why but mostly, I find the support I need to continue to hope and fight to overcome. There is great power to be found in the gift of validation.