A.L.

I was only two weeks old when my struggles with my health began. My mom found me in my crib, blue in the face and not breathing, and frantically performed CPR while my dad dialed 911. When the EMTs arrived, they stabilized me before immediately transporting me to our local hospital in Ventura for treatment, where doctors found fluid in my lungs that had completely incapacitated my ability to breat. After removing the fluids, the doctors decided that they did not have the means to treat me and sent me to Cottage Hospital in Santa Barbara, where I would spend the next few weeks of my life undergoing a series of tests in the hopes that doctors would be able to determine the source of the fluids and fix the problem before the damage became too severe. 

I was six weeks old when we finally received a diagnosis: I had an H-type tracheoesophageal (TE) fistula, a congenital defect that causes connections to form between the trachea and the esophagus where there should not be any connections at all. This was an unexpected diagnosis, since the defect only occurs in approximately 0.001% of the US population. Having a diagnosis gave us a chance to start moving forward with treatment, but my journey was far from over - if anything, it was only beginning.

From day one, my doctors warned my parents of the many problems that would come from the complications related to my condition, including moderate to severe learning disabilities, difficulties speaking and eating, and malformation of the muscles in my torso which would likely leave me unable to walk. Although these predictions were terrifying, they made my parents, and later me, all the more determined to find new ways for me to overcome the obstacles created by my TE fistula. I had daily breathing treatments for 15 minutes a day until the age of six to strengthen my lungs. I was enrolled in gymnastics classes that would help develop the abdominal muscles that were weakened by my condition. My parents and grandmother made painstaking efforts to make everyday experiences a learning opportunity that would allow to me grow and develop in the same way any typically developed child would. 

None of it was easy, and there were days when I was frustrated that some tasks were so much more difficult for me than they were for others around me, but I never allowed it to deter me from trying my best to strengthen my body and mind with each and every activity. These efforts were not in vain - in many ways, I grew up to be a typically developed individual. However, my condition would still continue to plague me throughout my childhood, and well on into adulthood. 

I would go on to have thirteen surgeries in eighteen years for my TE fistula and other congenital defects, with eleven of them taking place before my tenth birthday. After the final surgery, my doctors determined that they were finally able to fully correct the issue, and no further surgeries would be needed. My family and I were thrilled - we believed we were finally done dealing with these issues that had taken up so much of our lives. We had no way of knowing that there was more trauma to come.

The healing process was difficult, and with each surgery came more and more scar tissue building up in my abdomen, further limiting the development of my organs, muscles, joints and bones in that region. Eventually, I developed a condition known as endometriosis, which caused uterine tissue to grow around my scar tissue and cysts to develop on my ovaries. This caused me constant pelvic and abdominal pain and took nearly two years to diagnose. It would be another two years after that before my doctors and I were able to find a treatment that would control the condition. 

During this time, the scar tissue began to cause issues lower down in my body - as the excess tissue built up over time, it had nothing to attach to, and began to bear down on my hip joints. This has caused my femurs to begin popping and becoming unsettled in their sockets, and has placed severe wear on my knees as well. The pain from this is chronic - it is there when I wake up, when I go to sleep, and when I engage in daily activities. It will always be a part of my life, and will grow worse as I continue to grow older. It will likely cause acute damage to my legs that will require me to undergo further surgeries when I am older, and will limit my ability to walk and move without the assistance of a cane, walker, or possibly even a wheelchair.

Despite this, I rarely share with others the nature of my condition or my chronic pain. This is for two reasons: one - some health challenges I’ve faced are not often discussed in public because of the stigma that surrounds them, and I worry that I will make those around me uncomfortable by speaking about them. Two - I don’t look sick. 

It is a common misconception that illnesses or other health issues are only real if they produce visible, physical signs of sickness. This is what prevents many people like me from sharing their stories - we worry that we will not be believed, that we will be accused of lying or faking it to get attention and sympathy. But as I have begun opening up to others, I have seen that there are so many people with health issues who suffer silently because they are afraid of how their story will be perceived. That is why I have chosen to begin speaking out publicly about my struggles - to inspire others to do the same and help raise awareness for these invisible illnesses. It is still terrifying every time I share my story for the first time - I am always afraid that people will treat me differently, that they will not take me seriously, or that they will see me as less of a person for my struggles. But every time, I am greeted with love, understanding, and stories of people who have faced similar struggles, but rarely opened up because they harbored the same fears of rejection that I did.

I know now that being open and honest about what we are going through is one of the most important parts of the healing process, whether your health issues are physical or mental. To every person reading this - know that if you have ever struggled with an “invisible” illness, that you are not alone. Your struggles are valid and real - you do not have to look sick to be sick, and you should never have to hide your pain to make others feel comfortable.