When I was 19 my first toe started to ache. The ache quickly turned into the typical pain, swelling, and inflammation that those of us with inflammatory arthritis know too well. From my toe, it spread to a number of other joints and it was months before a diagnosis of inflammatory arthritis was given to me. Those ‘in-between’ months of not knowing what was happening to my body were just as confusing and overwhelming as the diagnosis itself. Although the diagnosis provided some clarity, I was left with the feeling of “now what”? What was happening to me and why?
Having a name to put to a growing list of symptoms was comforting in a sense, but there was no explanation as to why this was happening to me and why my immune system decided to start attacking my joints. My rheumatologist at the time tried to comfort me with the line, “Don’t worry, you don’t have cancer.” Sure, this wasn’t a diagnosis that was life-threatening, but knowing that this slow attack of my joints was going to continue for the rest of my life, requiring an endless supply of pharmaceutical drugs to stop the joint degradation and pain, was of little comfort. In fact, it led to a spiral of questions in my head and a lot of processing, most of which I had to do by myself because there were few resources to help me understand and work through the confusion. I was 19, you’re not supposed to get arthritis until old age….right?
I didn’t even understand what an autoimmune disease was. It would take a lot of self-research to determine this. I had to process this while dealing with the pain, inflammation, and general inability to get out of bed and walk around like a functioning adult. I felt like I was the only teenager that had arthritis and I had no idea why. This state of overwhelm was extremely confusing and I was stuck there for far too long. I was fortunate, however, that the anti-inflammatory medication started to work fairly quickly. A little over a year after my diagnosis, my inflammation and pain was under control with a growing list of pharmaceuticals and side effects. I tried to push all of this to the back of my mind and went through life without thinking much about it at all.
It took about 7 years before I finally started thinking about my health and the implications of my lifestyle. I started looking into nutrition and holistic wellness (see “My Healing Journey”) and decided that it was time to put my health first. I now know that it didn’t need to take this long to start thinking about nutrition, but I was missing resources (see “What blocks our access to knowledge about nutrition”) to even begin the conversation around diet and autoimmunity.
So, you’ve been diagnosed with an autoimmune disease? If you’re in this strange transition period of discovering all you can about your disease, but are extremely overwhelmed with the information and wondering where do you even begin, find comfort in the fact that you are not alone. The circumstances that brought you here aligned for reasons we can’t always understand. It’s an important experience in your life and nutrition can play a role in helping you to feel better while working through the confusion.
Disease can often force us to question our health and lifestyle. My experience with inflammatory arthritis ultimately led me to restore my health and, for that, I am grateful. The diagnosis was not a life-sentence, it was a life-changer. My hope is that our experience and conversations during diagnosis and post-diagnosis change so that we can start talking about how to move forward and manage our conditions to the best of our abilities. Sure, there is confusion, but what if that confusion was turned into clarity? That’s my hope for the world of autoimmune disorders and it’s one of the key inspirations for the work I do now. Let’s start the conversation and begin turning the confusion into clarity.