Living with a chronic autoimmune disease is a challenge, but it doesn’t have to limit your potential for success or happiness. As a female entrepreneur leading a multimillion-dollar education business, balancing the duties of being a mom and wife, and managing my disease holistically, I know firsthand the struggles and opportunities that come with living with non-radiographic axial spondyloarthritis (axSpA).
Living with Axial Spondyloarthritis
I was diagnosed with axSpA in my mid 30s after having my second son, and it has been a constant presence in my life ever since. My path to a diagnosis took six years, which is just shy of the average in uncovering these “invisible illnesses.” I felt utterly hopeless, out of control, and heavily burdened in my body and spirit.
Daily life included unexplained muscle tears and bone fractures. By 2 p.m., I needed to lie down because holding my head up was nearly impossible.
I used to crawl upstairs in tears, step-by-step, like an injured animal.
After years of searching for answers, I was finally diagnosed with axSpA, chronic fatigue syndrome, and fibromyalgia. Initially, I struggled to find ways to manage my symptoms effectively, and it was challenging to navigate work and personal life while dealing with the pain and fatigue that often come with having an autoimmune disease.
As I worked to manage my symptoms with medicine alone, I realized that, for me, the key to living well was to take a holistic approach to my health. In addition to conventional medical treatments, I attended a month-long naturopathic health retreat and began to incorporate daily habits that included reducing known inflammatory foods, like gluten and sugar, movement that felt right for my body, and stress management techniques like massage, meditation, and prayer walks. I used basic things like hot Epsom salt baths, gentle stretching in the morning and evening, and knowing that my days were better counted using “spoons”* rather than hours, as this helped balance my intention with my ability.
One of the things we lose right away with these diagnoses is our sense of control and strength. We start to believe that we will never again be “enough.” We feel that we burden our loved ones, that we are incapable of hiking or zip-lining or, frankly, even committing to a late night out with our friends. We have a choice to make—we can either believe happiness is over or we can decide that we have the chance to design a new life that takes our disease into consideration but does not let it define us. I must choose the latter daily because, through the hardest flares, it takes a deep-rooted confidence to remember that “this too shall pass.”
Leading a National Educational Business and Managing the Role of CEO
Running a successful business requires dedication, hard mental and physical work, and a passion for what you do. I founded Total Health, a national medical education company that trains cancer-care physicians and nurses on best practices to improve patient outcomes. I am proud of the work we have accomplished and the impact we have had on cancer care across the country.
However, leading a business while managing axSpA has not been without its challenges. The stress can exacerbate my symptoms, including memory loss and brain fog, making it difficult to focus on my work. I have found that being open and honest about my condition has helped me build stronger professional relationships. Living with autoimmune disease allows me to identify at a different level with patients living with cancer and, more importantly, helps me develop stronger communication strategies for doctors to educate and empower patients to live well after their diagnosis.
Empowering Others to Live Well with Autoimmune Disease
My husband and I have three children, and raising them while managing my condition, has been a journey of its own. My family is the most important part of my life. While living with axSpA can make regular activities with children or intimacy with your spouse difficult, I have found that communication is key. Letting them know you’re reaching your limit lets them become a part of your healing and makes them powerful, compassionate caregivers.
One of the biggest challenges of living with axSpA is the unpredictability of the disease. Some days I wake up feeling relatively pain-free, while other days I struggle to get out of bed because of the pain in my hips and back. I also have very limited stamina in my hands, making typing and holding a pen or even a coffee cup very difficult. It can be frustrating to feel like my body is not under my control, but I have learned to accept the unpredictability and focus on what I can control. Sometimes I feel like I am living with PTSD, hoping that my next flare won’t be as debilitating as my worst, but knowing that I have no control over that. The best I can do is all I can do—and I need to remember that and give myself the space and grace to believe it.
For me, that means prioritizing self-care and managing my stress levels. I find that gentle exercise, such as functional stretching or swimming, can help alleviate my symptoms and improve my overall well-being. I also prioritize getting enough sleep by starting to wind down by 8 p.m., taking melatonin supplements, and eating foods that support the way I feel—like cool cucumber and mint soup or a bowl of oats and chia with delicious chicken sausage. I also take micro-breaks throughout the day to rest and recharge, which can include stepping away from my desk to walk barefoot in my backyard.
But self-care is not just about taking care of your physical health. It’s also about taking care of your mental and emotional well-being. For me, that means finding ways to manage stress and cultivate joy in my life. I love movie nights with my boys, reading and teaching Bible study, and practicing gratitude. This disease makes me pay attention to the things I can do as opposed to focusing on what I can’t. These activities help me stay grounded and focused on what’s most important in my life.
I firmly believe it’s vital that we advocate for ourselves and our health. Be proactive about your medical care and advocate for the treatments and resources you need to manage your condition effectively. You are living your experience. Do not permit anyone to tell you otherwise. It also means educating others about our illnesses and raising awareness about the challenges that people like us face. I have embraced my disease as a catalyst of growth and self-discovery, and I try to encourage others to do the same.
Living with this diagnosis has not been easy, but it has taught me valuable lessons about resilience, consistency, and the power of community. I hope to inspire people to live well while living with chronic illness. We didn’t ask for this path but, by sharing our stories, committing to hopefulness and supporting one another with love and kindness, we can manage our disease and live full and meaningful lives.
*The Spoon Theory is a concept that was developed by Christine Miserandino to explain what it’s like to live with a chronic illness. The theory uses the idea of spoons as a metaphor for energy or physical resources that a person with a chronic illness has available to them each day. In the theory, each spoon represents a certain amount of energy or resources that a person with a chronic illness has to use each day.
A person with a chronic illness may have a limited number of spoons available to them each day. This means that they have to carefully manage their spoons in order to make it through the day without running out of energy or becoming too fatigued to function.
About Sarah:
Sarah Louden, MHA, MBA is the Founder and CEO of Total Health, the largest provider of free oncology medical education in the United States. To hear more from Sarah, you can find her on LinkedIn. To learn more about Total Health, visit www.totalhealthconferencing.com and follow Total Health on Facebook, Twitter, LinkedIn and YouTube.
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