‘The doctor secretly put in my chart, ‘Borderline personalities due to dislike of multiple providers.’ I was down to 107 pounds, in constant pain. No one was willing to listen.’: Nurse, chronic illness warrior shares emotional journey to diagnosis

“Every child has dreams of where their life will take them when they grow up.  I had a happy, healthy childhood full of dreams. In high school I knew that I wanted to help people and that I wanted to travel the world. What I didn’t realize then were the significant obstacles I would face in my adulthood in trying to achieve those dreams. I was 18 when I can pinpoint that I started developing chronic illness. In July 2009, I had a urinary tract infection that was treated with antibiotics. From that point on, I had several urinary tract infections throughout my college experience, treated with antibiotics and followed by yeast infections. Shortly after I started my first semester of college in a nursing program in Fall 2009, I started developing panic attacks, which was later attributed to an oral birth control made for PMS that was given to me, although I did not have PMS symptoms. These panic attacks resolved after discontinuing the birth control pill.

I also was vomiting for unknown reasons, which resolved at that time with cutting out dairy. In 2010 or 2011 I started developing issues with chronic fatigue. It became more noticeable the summer of 2011 when I couldn’t wake up to my alarms. I started my first nursing classes in fall 2011, and was missing classes from sleeping in and falling asleep while studying. I ended up having to retake a class in spring 2012 before I could move on to a new semester of nursing classes.  While taking this class with more manageable electives, I was still sleeping 12 hours a day and requiring naps. Concerned family and friends who thought I was depressed recommended seeing a doctor. After failing anti-depressant trials, a sleep study was conducted. I found out my first week of my hardest semester of nursing classes in late summer 2012 that the sleep study results showed that I have narcolepsy without cataplexy. I didn’t have a lot of time to digest that diagnosis given all that was going on in my life. I was given medications, and quickly had to adjust to life taking medicines to fit around my school schedule in order to function enough to study. It was a constant adjustment throughout the next two years of school to get the medication dose to keep up with my fatigue and napping symptoms.

Nursing school was hard, but my fatigue made it even harder. It took a lot of extra time to study with the immense brain fog that I was experiencing. When I was looking for my senior partnerships and for my first nursing jobs in 2014, I experienced even more barriers, as many of the places in my central Maine were not looking for a new nurse that couldn’t work night shifts. Eventually I found a full-time job in July 2014 as a psych nursing working a 12-hour day shift. This job ended up being a blessing for me. I learned a lot and had great co-workers that felt like family. I ended up finding my niche, loving that I was able to spend time talking to people, getting to know them, and helping them through difficult life circumstances.

In August 2016, my own life circumstances became difficult. I started vomiting, and thought I had the flu. Unfortunately, the vomiting didn’t stop. After weeks of vomiting, I had an endoscopy done that showed ‘severe erosive esophagogastritis.’ I was put on anti-acid medications, and was told in a couple of months I would be back to normal. Unfortunately, that was not the case. I spent months eating only rotisserie chicken, potatoes and carrots for meals or smoothies. Eventually, it got to a point where I couldn’t eat any solid food at all. I worked until March 2017, when it got to the point that I couldn’t function anymore. I had dropped down to about 115 pounds from 130 pounds. I had a lot of difficulty eating, and while I was at work I was vomiting between patients and resting. I was having tingling down my back and neck and into my extremities and significant back pain. When I was charting, I had a heating pad attached to my back. I had gotten Essure coils placed in December 2017 that were causing significant pinching pain down my bikini line and into my legs.

At the point that I had to stop working, I became very depressed. I cried constantly. I felt like the dreams I had for my life were disappearing in front of me. When I thought it couldn’t get any worse, in April 2017, I developed constant vaginal pain. I thought that I had a yeast infection. I was tested for yeast infection and bacterial vaginosis several times before it was concluded that I have vulvodynia, a condition that essentially means ‘vaginal pain: but we don’t know what the cause is.’ In May 2017, I was driven from Maine to North Carolina where I paid thousands of dollars out of pocket to get my Essure coils removed by a fertility specialist. I was convinced this was the cause of my vulvodynia.  It turned out to be the reason for the pinching pain I experienced, and that went away immediately after the pain from the surgery subsided. Unfortunately, it did not get rid of my vulvodynia pain.

After this surgery, I noticed that I developed lower GI issues with irregular bowel movements, bloating, and gas. Unfortunately, I continued to lose weight quickly. I became more and more hopeless that I would never get better. I developed panic attacks, and my sister and parents were visiting frequently as they were worried about my mental health. I didn’t want to be alone. I spent my days incessantly searching the internet for a cure to my ailments. I spent money I didn’t have and worked with a naturopathic doctor trying to get to the root cause of my illnesses. I tested for food intolerances and took gut healing supplements. I continued to work with conventional medicine doctors.

By end of June 2017, I started going to a GI doctor out of state because local doctors didn’t do any tests, instead they kept prescribing more medications. A small sliver of hope came when my new GI doctor had ordered a HIDA scan that showed I had a low ejection fraction, meaning I was not ejecting bile as much as needed when digesting.  The GI doctor felt that my gallbladder not functioning was the reason for my digestive problems. The surgeon said it was a 50/50 chance it could help. At this point I was 109 pounds, and I was so desperate to feel better that I took the chance.  Unfortunately, it didn’t help, it just made it harder to break down fats. When they took out of my gallbladder they found no stones, sludge or infection, only ‘chronic inflammation.’ Eventually, with coming off of medications for my narcolepsy and the right combination of nausea medications I was able to gain some weight, reduce the amount of vomiting I was doing, and start working again in October 2017.

I changed my job to one with eight hour shifts. I managed a very strict diet, keeping away from all of the foods that were ‘bad’ for me. I kept a strict sleep pattern. Eventually, I was able to save up enough money to work with a functional medicine doctor. The functional medicine doctor seemed to help me improve somewhat, and understanding more about the impact my environmental and lifestyle choices have on my body has been an invaluable part of my health journey. However, after a year of working two jobs to pay for it, I got to a point I wasn’t able to work with the doctor anymore. I got to a point that I not only stopped working with local GI doctors, I left any local doctor that was not willing to work with me in my health journey.

Instead, I found a doctor in Arizona who had a different approach to vulvodynia. I found a doctor in Boston who specialized in IBS and he referred me to another Boston doctor to consult on functional dyspepsia. I found a urogynecologist who put me on cranberry supplements and I stopped having UTIs. We also realized the UTIs were likely interstitial cystitis all along, and she accepted my opinions on the medication regimen that we have agreed upon together to manage the pain. She referred me to a vulvodynia specialist who got me to a pelvic floor physical therapist and gave me pelvic floor botox injections that have helped my pain. It took time, but eventually this team of doctors started helping me piece my life back together while also valuing my opinion as a patient and how I should proceed in the care of my own body.

The local doctors I worked with in 2017 had been unwilling to listen to me when I begged not to be put on another acid reflux medication because I didn’t believe I had acid reflux. They didn’t bother doing other tests when I continued to lose weight and get sick. They discredited my thoughts on the naturopathic/functional medicine approach. They didn’t listen to me when I told them I wanted the Essure coils were out. I continued to hear I was anxious and that I needed to be put on medications for it because it was causing my health problems. They also didn’t listen to me when I asked for a referral to pelvic floor physical therapy in lieu of medications.

I also later found out when I was getting records sent to a new doctor that the previous doctor put in my chart, without discussing with me at any point or offering a mental health referral, that they felt I had ‘borderline personalities alluded to due to dislike of multiple providers.’ I started therapy in 2019 and realized how traumatic this experience had been for me and how much anger I was holding on to about how I was treated by the people around me. I felt very frequently ignored by the providers during my calls for help. Some friends stopped asking me to hang out or offering to come hang out with me when I got sick. My long term partner stayed with me, but was not emotionally available in the way that I needed. My self esteem was so fragile.

Today I am still ill. I have these labels of narcolepsy, functional dyspepsia, sucrase deficiency, IBS, a kidney stone, interstitial cystitis, vulvodynia and now suspected mast cell activation syndrome. My symptoms are manageable. I am getting stronger mentally and physically. I am not letting these labels define me in a negative light so much anymore.

Not everything about these illnesses have been negative in my life. I am choosing to use my experiences as lessons about how to live my life now. This experience has made me a kinder, more empathetic person. It has made me a better nurse. It has made me a better advocate for what I need in my life. It has made me more in tune with my body. It has made me realize that life is short. While I’m still looking for the pieces of the puzzle to my illness, I’m no longer solely focused on finding the cure so that I can live my life. I’m trying to enjoy what I have in my life with what I have in the moment. I’m not waiting to feel better to go after my dreams anymore. This past year I sold my home, quit my job, and ended a relationship where I did not feel valued anymore. I’m now residing in Maryland where, in a couple of days, I will be starting my dream job, which is my first psychiatric travel nursing assignment. I am learning to find the value in myself regardless of my health problems. I may always have these labels, but I’ll continue to love myself even with the labels and pursue the life I deserve to live despite the labels.”