‘I burst into tears. ‘You’re not crazy,’ my doctor said as he held my hand.’: Woman with chronic illness shares journey to diagnosis

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“Eight years ago, I got sick and never recovered. That year I had enlisted in the Air Force, graduated high school, grieved the deaths of two of my friends, and the end of a toxic relationship. My ambitions of serving in the Air Force quickly came to an end as my symptoms persisted and worsened. At first, what started out as mild symptoms of fatigue, stomach pain, and nausea quickly escalated to severe nausea and frequent vomiting with anything I ate, bloating, chronic pain, and fainting spells. Before my start date for boot camp, I was medically disqualified, and little did I know, my journey with chronic illness was just beginning.

woman showing her body before surgery
Courtesy of Barbara Sandino

As my symptoms intensified, I was visiting the hospital more and more frequently. I had seen many doctors and they all assured me that I was perfectly healthy time and time again. ‘Your labs look good, and all of our tests came back with nothing out of the ordinary. I suggest following up with a therapist to cope with the stress in your life.’ They couldn’t find any reason for my symptoms, any concrete diagnosis, but it was clear that something was wrong. I had gone through several primary care doctors and gastroenterologists, and they all told me the same thing as I got sicker and sicker. There had been times when I was so ill, I truly thought I was going to die. Vomiting up anything that I put into my body, I was constantly in and out of the hospital for antiemetics to stop nausea and vomiting and IV fluids to hydrate me when I couldn’t keep anything down for periods of time.

Stress and poor mental health were attributed to be the cause of my symptoms. Some doctors would flat out tell me that it was all in my head. I had heard this so much that I actually started to believe it. Other doctors had made up their minds that I was a drug addict looking for IV pain medicine because I was frequenting the hospital so much, sick, desperate for relief and answers. I have been denied care before by certain doctors before because they thought I was faking my symptoms. I couldn’t fathom what I was experiencing. ‘Why am I being treated this way? Why can’t anyone figure out what is wrong with me? Is it really just all in my head like these doctors are telling me?’

These questions circled around in my mind constantly. My mental health declined as time went on. My anxiety and depression worsened as I got sicker, and I developed PTSD from the medical trauma I experienced. After a few years had gone by without receiving a diagnosis, experiencing gaslighting, and misdiagnoses from the doctor after doctor, I had gotten to a point of such medical burnout and frustration of not being believed that I stopped going to the doctors altogether. I felt completely hopeless, and I was convinced that no one was going to help me. It was at this point in my life that I met a dear friend who changed my life. She was around the same age as me, and she had an autoimmune condition known as celiac disease.

woman taking a selfie
Courtesy of Barbara Sandino

We met through family friends, and we became very close, relating over chronic illness, although at this time, I was still undiagnosed. She managed her symptoms of nausea and vomiting by smoking marijuana and suggested that it would help me too. I was open to the idea, but I never knew how much it would help me. It provided immense relief from my nausea and chronic stomach pain, and it even stimulated my appetite. For the first time in years, I had felt relief from the debilitating symptoms that I was so desperate for. That was how I began to manage my symptoms. She even connected me with the gastroenterologist who diagnosed her. She raved about how caring and professional he was, and how much he helped her. I had never heard of this doctor before, and he wasn’t too far away from where I was located. I felt hope for the first time in a long time.

Maybe this doctor would be different. Maybe he would be able to give me the answers I was desperately searching for. My symptoms were wreaking havoc on my life, and my health was deteriorating, physically and mentally. I couldn’t attend college, I was struggling to hold down a job and just to get out of bed in the morning. Daily life felt like a constant struggle. I knew I needed to take action for the sake of my health, despite many negative experiences with medical professionals. I made an appointment with this new doctor, hopeful, but still hesitant. The day of the appointment finally came after what felt like an eternity of waiting.

The appointment consisted of a thorough assessment of my medical history, my current symptoms, and my family history. I spent at least an hour in his office, which was very different from my previous experiences with doctors where I was rushed in and out within fifteen minutes. At the end of the appointment, the doctor explained that my symptoms sounded consistent with what he referred to as delayed gastric emptying, also known as gastroparesis. I was set up for a test called a gastric emptying study, which would determine if this was in fact the illness that was causing my symptoms.

heart rates
Courtesy of Barbara Sandino

That test would come sooner than I had anticipated when my severe symptoms landed me in the hospital once again. Fortunately, my new gastroenterologist had privileges at this hospital where I was admitted and the test was performed within the next couple of days. The test consists of eating a meal that contains radioactive isotopes and is measured by how long it takes to empty out of the stomach by frequently taking scans. I struggled to eat the radioactive scrambled eggs then lie in a machine for hours while the test was conducted. I lay there scared and anxious for the test to be over.

I’m forever grateful for the nurse who sat and talked with me the entire time to ease my anxiety. After the test was over, I was sent back to my room and the results were sent to my doctor. The next day, I got the news that would forever change my life. My doctor came into my hospital room and explained that the results of the test showed that I had gastroparesis, as suspected. A rare, incurable, disease, which causes partial or full paralysis of the stomach. I remember bursting out into tears as my doctor told me this. ‘I’m not crazy, I’m not crazy,’ I repeated over and over through sobs. ‘You’re not crazy,’ my doctor said as he held my hand.

It felt like an immense weight had been lifted off of my shoulders. I finally had a diagnosis. It wasn’t all in my head like so many doctors had said to me before. I was told to make changes to my diet by avoiding foods high in fat and fiber, eating smaller, more frequent meals, and was put on new medications to treat my newly diagnosed chronic illness. However, since my diagnosis five years ago, the way I treat my symptoms has changed.

doctors office
Courtesy of Barbara Sandino

Over the years, I have tried several different medications to treat my gastroparesis, which have all either been ineffective or made me sicker. I was also diagnosed with epilepsy shortly after my gastroparesis diagnosis, and more health issues have surfaced recently. I continue to smoke medical marijuana to manage my symptoms combined with some western medicine and holistic health approaches. My daily life looks much different now than before I became chronically ill. My days are always planned around how I’m feeling. I start off each day by taking my blood pressure (doctor’s orders) and my first dose of epilepsy medication.

I have not been able to work due to my chronic illnesses, so I spend most of my time with my parents, who are my caretakers, managing my symptoms the best I can and raising awareness about chronic illness and disability. I can’t eat some of my favorite foods that I once enjoyed, but my gastroparesis has forced me to eat healthier, and I’m more mindful about what I put into my body. I lost many friends after I got sick, but I gained some great ones who I met through chronic illness support communities. My life has changed drastically, and I have lost a lot, but I have also gained so much.

selfie before surgery
Courtesy of Barbara Sandino

Currently, in my journey with chronic illness, I am recovering from surgery. I had a procedure done less than a month ago as another attempt to decrease the severity of my gastroparesis symptoms. I have made some progress, but there have also been some setbacks in my recovery; however, my doctor and I remain hopeful. I am presently being tested for other potential health issues and remain under careful supervision by my medical care team. It has taken a lot of time, mindset work, and therapy, but I am learning how to live joyfully and abundantly alongside my illnesses.

selfie after surgery
Courtesy of Barbara Sandino

However, being chronically ill has its challenges, especially when it comes to society. Since I’m young, many people, even medical professionals at times, question that I am actually sick. ‘You’re too young for that,’ and, ‘Get better soon,’ are the most common things that people say to me when they learn I am chronically ill. If I use a mobility aid in public, I am often stared at, pointed at, and even sometimes questioned about my medical problems. These types of reactions make me feel judged, misunderstood, and incredibly frustrated.

I wish others knew that living with chronic illness/disability doesn’t look the same for everyone. It doesn’t matter how old you are, how much you weigh, or how active you are, anyone can become disabled at any time. I also wish that others who are part of the chronically ill/disabled community knew that they too can live joyfully alongside their condition(s). What has helped me the most in my journey with chronic illness is changing my mindset and building my support system by meeting others with similar conditions.

I hope by sharing my story, I have inspired, educated, or otherwise helped someone reading this somehow. Some of my hopes and goals for the future are to write a book about what I learned over the years in navigating life with chronic illness, and to one day build my own coaching program to help others who are struggling to live alongside their illness(es). I also post content about chronic illness on Instagram to help raise awareness and inspire others while documenting my journey. My ultimate goal is to reach more people with my writing and make an impact in their lives.”

woman with her cane
Courtesy of Barbara Sandino

This story was submitted to Love What Matters by Barbara Sandino from Bristol, Connecticut. You can follow her journey on Instagram. 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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