On her blog and on Twitter, Kristin talks about chronic diseases and being a fighter that is determined to win. The 2015 Social Media Maven of the Year and 2016 Stanford Medicine X Advisory Board Member shares with us the journey of fighting chronic diseases and what it means to have invisible illnesses.
* Read her blog at Chronically Kristin
* Follow her on Twitter @KristinMCoppens
More than four years ago, that “beep, beep, beep” of my alarm clock would illicit a groan and a quick hop out of bed. No one likes waking up early, right? Fast forward to today? That same alarm becomes jarring. That groan becomes more than a benign complaint. That quick hop becomes an hour debate with my body. After a diagnosis of 6 different chronic diseases, that alarm is my own little enemy.
My story as a multiple chronic diseases fighter officially began about 4 years ago. Through persistent hip and lower back pain for about 8 months, I was finally referred to a Rheumatologist. Going through what seemed like every blood test, scan, and questionnaire in the book, I was finally diagnosed with Ankylosing Spondylitis, which is an autoimmune inflammatory arthritis of the spine. Later on, I acquired a few more friends for my party: Fibromyalgia, Chronic Fatigue Syndrome, Costochondritis, Depression, Rhinitis, and Anxiety. Long story short: I have tried a number of medications and treatment plans before settling on what I am currently implementing today. Although I am not as well managed as I would eventually like to be, the current medications are working better than anything else has worked previously.
Living with chronic diseases takes effort. That probably sounds a little bizarre, but what I mean by that is that it takes multiple facets of effort to live a fulfilling life when you are battling different chronic conditions. For example, I’m exhausted 24 hours a day, 7 days a week, 365 days a year. I often explain this as a feeling of going on zero sleep for days, and then wearing a weighted suit around. Therefore it takes effort to get up, to go to work, to spend time with my friends, to exercise.
A big part of that effort relates to identifying with invisible versus visible illnesses. I’ve had numerous people ask me if I would rather have an invisible illness or a visible illness. It’s a great question! My answer has probably evolved over the years as well. When I was first diagnosed, I might have answered differently than I do now: that I would rather have invisible illnesses. As hard as it can be to have diseases that people cannot see when they first look at you, I do cherish the fact that it’s not the first impression I give to someone. Having invisible illnesses can be isolating and lonely. There is a level of depression that comes with battling chronic diseases. In fact, 29% of adults who have medical conditions or chronic conditions have mental health conditions as well.
The pros of having invisible illnesses are especially apparent when meeting new people. I like that I don’t have to explain my diseases in the same breath as “Hi, I’m Kristin.” It helps me advocate for myself when I need to, but also allows me to not become defined by my illnesses. It’s stressful to manage and navigate multiple chronic conditions, but it helps to be able to almost “shut off” that part of my brain as well. Each one of my chronic diseases follows me everywhere that I go. I don’t get a break from symptoms or medications or doctors appointments. But I can take a break from thinking about all of those aspects.
One of my biggest pieces of advice when I’m advocating for patients and helping others who are struggling or who are just getting diagnoses is to share your story. The first place I turned to when I was diagnosed was social media. Granted, my career is in social media and digital communications, so it’s second nature to me; however, I knew I could find others who could relate to my new diagnosis and my new way of life if I searched online. What I found far surpassed what I expected. There is such a strong, passionate, and supportive community in the chronic disease world online. I have made lifelong friends, but have also found what I consider to be my calling. My health and patient advocacy work has completely changed my life. If there is a spot of light or a silver lining in having chronic pain and chronic diseases, this community is just that.
If I can help just one person by committing to 100% transparency in sharing my journey, than this struggle of mine is just a little bit less painful.
Thank you Kristin for sharing your inspiring story!
If you have a story to share with our readers about participating in a clinical trial, overcoming adversity or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Contact us to get started sharing your story now!