Today I got to connect with the only person in my life who knows exactly how it feels to be me. We crossed paths by complete coincidence around the time I was diagnosed and by some miraculous twist of fate, she has the same diagnosis. From that moment we shared a connection I didn’t have with anyone else. When you meet someone who has the exact same diagnosis that you do it’s a huge feeling of relief. To know that someone truly understands what it is like to live life with your disease is comforting. I wouldn’t wish what I live on anyone but to find her was like finding my soulmate. The only trouble is that Husby takes some offense to that so I’ll call her my soul sister. 😊
We don’t see each other often but she has become a very important part of my life. She understands the most intimate parts of this often ugly disease and we can talk openly and candidly about the way our lives are impacted. She knows what the pain feels like and the thoughts I have when I feel like I can’t get out of bed because she has those same days. She helps me feel normal even though we are both pretty far left of center in that department. She struggled much longer than I did to get a diagnosis and had I not met her I may never have gotten the care I did since she gave me the name of the doctor that was treating her. Without him I would probably be still floating around from doctor to doctor trying to find an answer to my symptoms.
She has walked a similar path to mine. She met her husband when she was healthy and he has stood by her as much as Husby stands by me. She has two children and works a full time and very demanding job. She knows the feeling of guilt when your baby is screaming in his crib and you can’t pick him up because of the pain. She and her husband have the same arguments about whether she’s pushing herself too hard or doing too much. She wakes up every day wondering how in the world she is going to find enough spoons to accomplish everything she needs to do. As a wife and mother she feels the weight of her family and their needs and puts them ahead of her own, often to her own detriment. We see ourselves in each other and share a bond that is invaluable. I am able to share with her thoughts and feelings that are almost impossible to put into words because the pain is indescribable.
When you’re a spoonie it is imperative that you surround yourself with a support network; doctors, therapists, family, and friends, but Soul Sister is in a category all her own. I wish we could see each other more often and spend more time together but life is busy and that’s understandable. Our doctors and therapists would probably balk at our conversations as they are mostly filled with complaints and commiseration but that is important to have. Neither of us has the answer to this disease and neither of us is getting better any time soon but we’re in it together and without her I don’t think I’d be where I am today.