The 'Hidden Victims' of My Rare Illness

Nobody is prepared to be diagnosed with a rare illness. It almost seems like one moment, life is normal, and then everything is ripped away. Life is never the same again. Between the unanswered questions, the repeated trips to the doctors and the illness, the person seems to wander aimlessly along. I remember feeling angry and sad at the life I once had and now had lost. I felt helpless at not being able to control what was happening to me. I also felt like a huge burden to those around me as this disease continued to ravage my body and left me, at times, incapacitated.

During it all, however, I was completely oblivious to the effects it was having on my family. When I developed this illness, I knew they were devastated by it. They hated seeing me so ill. I just had no idea what turmoil they were enduring daily. It wasn’t until recently that I came to realize the family members are hidden victims of people diagnosed with rare diseases like erythromelalgia.

During a particular bad episode recently, one that sent me to the hospital, my husband paced back and forth in front of me. He looked at me with loss in his eyes. It was the first time I realized that he felt completely and totally helpless. For him, this was devastating. He wanted to help me, wanted to make it all stop…but he couldn’t. This broke his heart. And at that very moment, during all my pain, I watched it happen. A lot of people who struggle with these types of diseases also struggle with guilt. So do the families.

I reassured him that just being there to support me meant everything in the world, even if he couldn’t make the pain stop. I think sometimes we forget the sacrifices our families make for us as we become so consumed in our pain. My husband often tells me he would trade places with me if he could to take away my pain.

I realize now that my family aches for me and my suffering. I tell them all the time that just being there for me is the greatest gift they could possibly give to me. My daughter and son often will sit with me during flares, so I don’t have to endure them alone. I thank them so much for being so empathetic. I know, deep down, how difficult it must be to watch me go through this. I am blessed to have such a caring and supportive family. Just as our families help to take care of us, we must take care of them emotionally as well. They are the hidden victims of these terrible diseases and often their voices are kept silent. Without my family’s love and support, I personally would not be able to endure the trials and tribulations I am put through daily. For them I am eternally grateful.

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