Receiving a late diagnosis of cystic fibrosis meant I spent my childhood and young adulthood being told that how I was feeling — both physically and emotionally — was wrong, and that I was “young” and “healthy.” Even as a young child, I had a sense that something did not feel quite right in my body, and I did not understand why I seemed to be sicker more often and longer than my siblings. I have memories as a young child experiencing digestive issues and pain after eating that was left unexplored and unexplained. Additionally, my ongoing respiratory infections were dismissed or minimized by doctors. I was told that my chronic illnesses, pain, and fatigue were unrelated or a figment of my imagination. The constant invalidation taught me to ignore my body and to push through the pain and illness.
Despite the ongoing invalidation, I continued to explore my physical health and attempted to discover the causes of my pulmonary and digestive issues. This led to a diagnosis of lactose intolerance, gluten intolerance, asthma, depression, etc. The treatment of these helped but didn’t resolve or explain the other symptoms I experienced. I worked to follow the treatment plans and care for myself with the information I had, still feeling more fatigued and sicker than those around me with no explanation. So onward I pushed.
My pregnancies were difficult, to put it lightly. With my first child, I experienced chest pain and spoke to several doctors who all stated it was “normal.” Once the pain became too severe, I went to the hospital where I was admitted to the ICU for an unexplained mass and infection. Many specialists were perplexed at the severity of my infection, and it required a delicate balance to treat myself while keeping the baby healthy. They were prepared to deliver the baby early but, fortunately, my body healed with weeks of treatment.
Five years later, with my third pregnancy, I began experiencing extreme itchiness, which revealed my liver levels were high. This was something previously indicated on blood work, and when I attempted to explore the elevated liver levels with my doctor, I was once again told I was “young and healthy,” and it was nothing to worry about.
After my third birth, I began experiencing worsening symptoms, specifically gastrointestinal concerns. I knew that this was more than a dietary concern but initially hesitated to see doctors. My GI doctors began running tests and results were coming back, and I began researching. One common thread between all my test result findings was cystic fibrosis. I reached out to my pulmonologist and requested testing for cystic fibrosis. She validated my concern and put in a request for a sweat test. The positive sweat test answered a lifetime of questions for me.
My diagnosis has evoked a feeling of grief but also of validation. Looking back, it all makes sense now, and I feel a justification around me.
My CF journey has been life-changing and challenging, but it has given me a lot of strength and the much-needed resources. I have learned how to trust myself — not only with my physical health but holistically.
Since my diagnosis, I have begun to listen to my intuition, setting my intentions on things that bring me joy and purpose. I spend my time with my children and loved ones, in nature, caring for my health, and helping others as a social worker. My diagnosis has given me the confidence to become a business owner, opening my own private counseling practice. Learning to lean into my intuition after a lifetime of being told it was wrong has been a challenge, but it is beyond rewarding. I feel healthier and more grounded with my physical, mental, and spiritual health than ever before.
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