Being diagnosed with an incurable illness is shocking. It sort of sucks the breath out of you for a moment while you try to wrap your brain around exactly what that means for your life. In a way, diagnosis comes as a relief. It validates all of the suffering and fatigue that you’ve been trying to convince people you’re actually experiencing. It also comes as a blow. It means that what you’ve been trying to convince others you’re dealing with is a very real and scary incurable illness. Then once it has time to sink in you begin to realize how lonely and hard the journey is actually going to be.
Recently I had a really bad flare of ulcerative colitis. At the time I had no idea that it was ulcerative colitis, I just knew that my stomach felt like I was being stabbed over and over and I would have happily considered having part of it removed in the middle of that pain. I was awake all night long because one simply does not sleep through an ulcerative colitis flare-up. At the time, I would lay in bed between sessions of balling up and clutching my stomach in agony and browse through Pinterest on my phone. Yes, I am a Pinterest addict. In the middle of this whole experience, I discovered something wonderful and exciting. All night long other autoimmunies were pinning pins off my autoimmune mess board. I wasn’t the only one struggling to sleep and scrolling through Pinterest to keep my mind off the pain. In fact, it was my only board being pinned overnight. I started paying attention to my pins and my autoimmune mess board saw most of its action overnight. Sure enough, I even came across this pin:
follow my autoimmune mess board on pinterest
At the same time, I had a friend who never seemed to care or understand when I was sick get diagnosed with an autoimmune disease. You know the saying, you never get it until you get it? She came to me overwhelmed and unsure asking me to give her an autoimmune 101 course so to speak. I began to organize all of the information and ideas that helped me understand exactly what autoimmune diseases mean and how to deal with our over all wellness and help alleviate certain symptoms. I realized in the middle of this that I really, really wished that someone had been there to do this for me. I had to learn what I know through research, trial and error. How helpful would it be to have a community of people around me encouraging me and sharing their experiences for me to learn from? So that brings us to this post. That is what this blog is going to be all about. This is a place where I would love to see all of us facing these invisible illnesses support one another so none of us have to feel alone in the middle of the night. It is a place where we should share what has worked and what hasn’t to help through our journeys and flares. It is also a place where we can be the honest messes that we are sometimes. No pretense is needed here. We all know that behind the half smiles of “I’m okay”, is a person who is in pain, or over-tired, or emotionally exhausted. This is a place where sometimes, we can all just be an autoimmune mess.
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