Wearing My Diseases

I didn’t set out to wear these things, in fact when I was diagnosed, I was told that I am a person who has such and such disease, not that I am that disease or that, that particular disease has me. Well, that is simply not true, sure I have these diseases but they truly have me as well. I wear these diseases every day whether I like it or not, whether I want them here with me or not they are a part of who I am and who I am becoming, and who I will be in the future. I didn’t set out to write about them all the time, or for them to be the focus of my life and for people to know me as this, it just sort of happened. See now people recognize me as me, but they also know me as what I have in way of the diseases and what they are doing to me because I decided if I was going to have to live with them, then I was going to share them with world to maybe one day help others. 

            I’ve always had empathy for other people, I am a classic empath if you believe in that sort of thing, if not then I just have a lot of empathy floating around inside me. I have always wanted to share with others things I have learned to help educate them, hence why I finally found myself in a classroom being a teacher. The teacher thing didn’t work out thanks to my diseases, but I haven’t let that stop me from sharing what I know. What I know now is a great deal about all my different diseases and conditions. I think I could in another life I could be a doctor with all the knowledge I have gained throughout these tumultuous years deal with all this. See I have had to do the research, I have had to learn to read the peer review journals, medical journals, research funded grants, research studies, and I’ve had to reach out to doctors, nurses, researchers, and the like to gain knowledge I nor my doctors had. See I couldn’t just have a normal disease that is common and known to most everyone in the world, nope I had to go and have uncommon, complicated, untruly researched, no one really knows type of diseases. 

            I have a few conditions and diseases that people know a lot about such as high blood pressure, asthma and type two diabetes but the rest of what I have blessed with, well not really a blessing more like a curse, is complicated, there are few doctors here and there that truly know all about it and can help manage it. The truth is, I have had to educate some doctors on what it is exactly I am facing and I’ve had to research the methods of how to treat the symptoms of the disease. Yep, you read that right, treat the symptoms there is no cure sadly for any of what I have, so we just have to treat the symptoms as they flare up or treat them to keep them tamped down and not allow them to progress at such a rapid pace. So here we are, treating the symptoms, trying to find a cure (which is in the very far future because there is no money to really research uncommon, complicated diseases), and figure out the lifespan of those of us with the diseases. 

            I didn’t set to be the spokesperson for my diseases, I didn’t in fact set out to talk about them much at all, and yet here we are. I am talking about them almost daily at this point as a way to educate others as to what I am dealing with and helping them understand that, and also help others who have rare complicated symptoms that no one can seem to put together, put them together. I have decided that I am going to be a testimony to what autoimmune and chronic illness life is all about. I am going to be the diseases spokesperson; I am going to wear them not really with pride but with a reverence. I am going to educate my fellow laymen on what I am dealing with, why I am so different than I used to be, what my daily life is like, and how we have all found ourselves here. So, while I truly didn’t want my disease and conditions to be who I am, I am now honest with myself and you that they are who I am, they are what make me, honestly me whether we all like it or not. Stick around with me and you will find that you will learn a lot and you will find that I live my life very raw, humorous, and real. I don’t hide much anymore, so be prepared for an open and very honest look into life with chronic illnesses. None of us set out become what we are, we grow into it, learn along the way, and allow life to shape us into what we are now. Join me for this chaotic ride I call life with chronic diseases and illnesses you might never have heard of.