My most favorite subject in school was English - I especially loved my 9th grade Creative Writing class. My teacher taught me that in order to be a great writer I would need to use the rule of the 5-W’s. The who, what, when, where and why of a story. By doing this, the reader is able to understand the full scope of what they are reading. I absolutely do not consider myself a great writer, but it is something that has brought me much enjoyment and peace throughout my life. So, I thought the 5-W’s would be a great way to introduce myself. Not only would you get to know me, but I would also be able to keep myself on track. I admit that my thinking has become much more linear than it used to be. My days of intuitive thinking are long gone. I need things in a logical order or else I won’t remember what I am doing. Just in the last couple of days I have come home from walking my critter kid to find the refrigerator wide open and have spent 2 days looking for my misplaced BP machine. It’s just where I am at.
#1 WHO - The first W is who I am. My name is Dee and I am currently living in Peoria, IL. A great little hidden gem of a city that has recently become our new home and community. I am a wife, mother, grandmother and pet-parent to the cutest Schnoodle ever. I love God, cooking, walking, journaling, crocheting, reading, painting, and being in nature. I enjoy movies, spending time with my family and growing a garden. I have Autonomic Small Fiber Neuropathy, POTS and Ross Syndrome. I am living with chronic illness. Take note that I have placed “living with chronic illness” as the very last description of myself. This has not always been the case. It has actually been quite a process for me to shift that description and way of thinking to fall last in line. I don’t want me or my life to be defined by my chronic illness.
#2 WHAT - The second W is quite complicated for me and I hope through this blog I will be able to unravel it a bit more. It is something that I have been reflecting on for the past few years. Chronic illness is the what that turned my life upside down. It is the what that affects just about every aspect of my daily living. It is the what that has the ability to completely consume my entire life if I allow it to. Chronic illness is multi faceted and invisible. On the outside I may look just fine, but underneath I am just struggling to make it through the day. There are times when I see my chronic illness through the lens of anger and ugliness. I also see the positive that has prevailed in so many areas of my life that I had just not seen before. It’s amazing how my life just doesn’t make any sense moving forward, but does as I look backwards.
#3 WHEN - The 3rd W of me echoes my last point. I don’t understand my life moving forward. It is only when I look behind me that things come together and make sense. The question of when I became ill has two very different answers depending on which direction I am viewing my life in. Viewing my life forward I came to believe that I became ill in 2018. As I view my life backwards, though, my chronic illness actually started in 2005. 2018 is the year that my illness finally progressed far enough that it “exploded”. 2018 is the year my life turned completely upside down.
2015 2018 2020
#4 WHERE- The fourth W is where I am in my life right now. The last few years have been the most difficult for me in my entire life. It has been a time where I have lost my identity of who I used to be. I have lost myself to a horrible, invisible illness that has robbed me of who I once was. At times when chronic illness is my first descriptor of myself it becomes extremely difficult for me to reflect on who I once was because grief, anger and depression become real. I miss myself and finding my way beyond chronic illness is a daily challenge but so worth it. Although not perfect, “I am chronically ill” is not the first way I describe myself anymore. I am living beyond it and am creating a new me which is an adventure in itself. Life is once again starting to feel good.
#5 WHY - The fifth W is the why for this blog. Living with chronic illness, no matter if you have been living with your diagnosis for a long time or whether you are new to your journey, one thing is the same…...living with chronic illness is so incredibly hard. When my life turned upside down, the one thing that I desperately needed was the support of others who could relate to what I was experiencing. People who knew what I was going through and could be the support and encouragement that I needed. I was unable to find any in-person support groups and was challenged with the fact that most online support was illness specific. To me chronic illness has no boundaries. I have worked with an amazing therapist over the past couple of years and he has helped me work through a very difficult season in my life. He has encouraged me to take these difficulties and use them to positively impact others. To be that encouragement and support that they are searching for. To make a positive out of a negative. So, my hope is that as I write about the details of my journey and of chronic illness in general you will find encouragement as well as community. And as a community and through our conversations we will be able to support one another to start living beyond our illness rather than living in our illness.
Hold onto hope!