“‘We are going to need to take some bloodwork because I think something else is going on.’ Those are words no one wants to hear from their doctor.
‘OK, that sounds good,’ I lied. My ophthalmologist then gave me a reassuring smile and left the room. I sat in that dark room as tears streamed down my face. I was now blind in one eye, despite a week of steroid eye drops to treat my sudden case of iritis—inflammation of the iris. I had just recovered from a painful case of shingles and I was only 22 years old. My body was falling apart and I didn’t know why.
People told me it was just stress. As if stress isn’t a big deal, making my health nothing to worry about? I was stressed and I was confused. I had just graduated with my bachelor’s in nursing, I was working the night shift as an oncology nurse, and I was planning my wedding. I felt like my life was controlling me and not the other way around. I was doing all of the ‘right’ things, but my new life as an independent adult was not how I had pictured it.
The blood work came back and I frantically googled my results: HLA-B27. I learned this is a gene that predisposes people to autoimmune conditions, particularly one called Ankylosing Spondylitis. I then saw horrifying pictures of crooked spines shaped from having AS. Many of these people attributed their disease to having the HLA-B27 gene.
With shaking hands, I wrote down the name of that disease and took it to my next appointment. After looking at my eye, my ophthalmologist leaned back and told me the good news; my iritis was starting to respond to the stronger steroids. But as for the risk of developing Ankylosing Spondylitis? ‘Oh you don’t have to worry about that, only middle-aged men get that disease.’ I’m not sure if he believed that statistic or if he was trying to make me feel better. Either way, I chose to believe him.
A few months later, I looked at the love of my life with perfect vision in both eyes as I walked down the aisle. The next chapter of my life (and my health) had begun. After our honeymoon, I moved to Chattanooga, TN, and began my new job on the Trauma Medical-Surgical floor of the hospital. I knew this exciting job was going to be stressful and I knew I was prone to inflammation. So, I decided to eat healthy to decrease inflammation and protect my precious eyesight. My mom gave me a cookbook called Against All Grain by Danielle Walker and when I saw there was a recipe for chocolate chip cookies, I was sold on going paleo. However, transitioning from eating ‘healthy’ to paleo was no easy task. Some recipes like zucchini spaghetti went well, but others like homemade mayonnaise completely defeated me… and my kitchen. Who knew the difference between olive oil and extra virgin olive oil was so important?
After several weeks, I felt more energized but I also felt deprived. I wanted to go out to eat and order whatever I wanted. It wasn’t fair I ‘had to’ eat differently. So, I decided I deserved some cheat weekends. My cheat weekends went from 2 days to 3 days to 4 days and before I knew it, I was no longer eating paleo. Sure, I didn’t feel as energized but it was summertime and I wanted to enjoy it with margaritas and enchiladas! Two summers later, enchiladas and margaritas could not help me enjoy life. My health had taken another turn and I felt helpless and alone like the months before my wedding.
Only this summer I wasn’t planning a wedding. I was training for a triathlon. I had done several triathlons before but training for this one was different. My hips and knees hurt so I did physical therapy to heal and prevent injuries. It didn’t help. In addition to the inflammation in my joints, I began developing bloating in my gut and decreased energy. That decreased energy led to fatigue. On days I didn’t work, I spent the whole day on the couch. When I managed to get to the grocery store, I felt like a robot that had just powered down. My brain just didn’t work. I couldn’t concentrate or remember what I was doing. I was tired. And I was tired of telling people I was tired.
My husband thankfully understood. While I lay on the couch, he worked his physically and mentally demanding job as a mechanical engineer. I cannot even begin to describe the guilt I felt watching him cook and clean in the evenings while I continued resting. I had so much love and appreciation for him, but so much hate and resentment for myself. That’s a feeling I have decided I will never have again.
After months of feeling this way, my symptoms progressed to severe hip and back pain and stiffness. One morning, as I limped to the bathroom unable to straighten my spine, it hit me. I must have Ankylosing Spondylitis. I went to several doctors and was given ibuprofen because what nurse doesn’t have back pain? Eventually, I was referred to a rheumatologist who looked at my MRI results. I held my husband’s hand and listened to my breath as I waited for the doctor to speak.
He glanced at me and said softly, ‘Yup, you have it.’ I was officially diagnosed with the disease I feared years ago. But the first emotion that swept over me was not fear or disappointment.
It was relief. At that moment, I realized I was not crazy. I was not lazy. I was not broken. I have an autoimmune disease. My rheumatologist prescribed a weekly biologic injection and sent me home. I was on the phone with my best friend as I gave myself my first injection and anxiously watched the bruising and swelling develop and then get better.
I was with my husband when my brain fog lifted. We were hiking on Lookout Mountain when I realized what was happening. I could think. I could look around. I could appreciate the beautiful fall leaves around us. I felt alive for the first time in a long time.
But after one year of being on the biologic, I felt in my gut I needed to do something different. I felt better but not my best. I knew it was time to try eating a non-inflammatory diet. I remembered the extra energy I felt while eating paleo and I wanted that again. After some research, I began the Autoimmune Paleo diet or AIP. This diet eliminates even more food groups than the regular paleo diet but something strange happened: I didn’t feel deprived this time.
I didn’t eat inflammatory foods because I simply didn’t want to. I cooked healthy foods because I believed I deserved to feel well. I listened to my body instead of trying to silence or ignore symptoms. I loved my body. I loved myself.
I began noticing subtle ways my body would communicate with me. I had increased inflammation and pain in my hips when I was stressed. I would limp into work, filled with anxiety and worry. I knew I was taking care of myself physically so I began learning how to take care of myself mentally. I began listening to life coaching podcasts and reading books about the mind. I studied how to decrease my stress and I applied it every day. After several months of doing this work on myself, I was able to walk into work painlessly and confidently, knowing I could handle anything I faced that day.
I was finally in control of my life. Having an autoimmune disease taught me how to show up for myself in a deeper, loving way I had never known. It taught me to take responsibility for my health and the results in my life. It taught me how to care for my greatest assets- my mind and body.
Then one day I admitted a patient at work who had an autoimmune disease. She told me she felt like she was a victim to her body and conventional medicine. This was her fourth time being admitted to the hospital. She felt frustrated and hopeless. I felt compelled to personally help her as much as I could.
I told her my story and her eyes got big. ‘I had no idea food and stress could affect my autoimmune disease. You have helped me so much.’ Something clicked for both of us. She decided to start the AIP diet as soon as she left the hospital.
I decided to become a life coach for autoimmune women. It wasn’t easy to walk away from the bedside, but working as a life coach full time has brought so much joy to my life. Every time a client tells me they are feeling better, we get to celebrate.
When I first started my business, I thought I would be primarily guiding autoimmune women through how to navigate changing their diet and other lifestyle changes. But as I coached more women and reflected on my own experience, I began to see the root cause of struggling with autoimmune disease is the way we interact with ourselves. When we expect perfection from ourselves, we are disappointed. When we view our bodies as undeserving, we use diet as a punishment. When we see ourselves as unworthy, we internalize the negativity in our life.
Here is the truth: you are worthy and you do not need a reason to believe it. You just are. Autoimmune disease is a circumstance that happened to you. Feel your feelings about it without resistance. Have compassion for yourself. Celebrate getting to a place where you can look back and connect the dots with symptoms. That is a milestone.
The person that knows how to take care of yourself is you. Show up for yourself from a place of love.
Do everything you can to take care of your body.
Do everything you can to take care of your mind.
Celebrate yourself for improving any symptom.
You absolutely deserve it.”
This story was submitted to Love What Matters by Laura Clowdus, RN-C, BSN, Certified Wellness Life Coach, Certified AIP Coach from Chattanooga, TN. Follow her journey on Instagram, her website, and TikTok. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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