“Despite being fairly healthy as a child, I have always seemed to be more injury-prone than my peers. I walked later than most children, but it was not late enough for anyone to investigate why. I started experiencing more health problems, like asthma and allergies, as I got closer to and especially after going through puberty. In high school, I had several fainting episodes. In my senior year, I tore my Achilles tendon while swimming in a meet. My doctors and physical therapists had a hard time believing I tore my Achilles while swimming because they had never heard of that mechanism of injury. That would be the last year I swam competitively after a lifetime of competitive swimming. Today, at 30 years old, I still miss it.
In my last swim season, I also struggled with shoulder dislocations. I spent a lot of time in physical therapy between the end of swim season and the beginning of my first year of college. When I started college, I found myself needing a nap every day after my college classes. I also spent the weekends catching up on sleep. I thought this was completely normal. I remember being frustrated at how much sleep I needed, but I just thought it was because I was taking a lot of hard classes I thought it was just part of college life.
During the winter break of my first year of college, I had surgery on my thumb to address chronic pain from a skiing injury some years prior. My thumb problems led to my first experiences with not being believed by the medical system. Multiple doctors told me there was no way it was causing as many problems as I claimed. My mom was an amazing advocate for me, and she would not give up on finding someone who believed me and would figure out how to fix it. I had severe anxiety related to anything medical and having to go to multiple doctors who did not believe me did not help this. I also had horrible anxiety about needles. When I had surgery, I started crying when we arrived at the hospital in anticipation of getting an IV.
This hand surgery led to my first encounter with disability services in the setting of higher education. I had a relatively good experience with disability services this first time, probably because I had a cast on my arm, which made the disability visual. The accommodations I needed were also straightforward.
The summer between my first and second years of college, I was able to do triathlons, which were a welcomed competitive outlet. At the end of the summer, I had to have surgery on my left shoulder because of repeated dislocations. While I was in physical therapy after my shoulder surgery, a physical therapist said to me, ‘Are you sure you don’t have Munchausen’s?’ I had been in physical therapy a lot over the last couple of years. I remember it like it was yesterday. I still think about what the physical therapist said regularly. I still wonder if maybe this is all in my head or if I am exaggerating or making things up. That comment made more of an impact than I think they could have ever imagined. Words matter immensely.
In the fall of my second year of college, I started regularly seeing a sports medicine doctor because it seemed like my body was always falling apart. I had started having low back pain and my other shoulder was causing a lot of problems. The Achilles tendon tear, shoulder dislocations, multiple sprained ankles, and lower back pain led to my sports medicine doctor questioning whether I might have a connective tissue disorder rather than a collection of isolated injuries. At the same time, my shoulder surgeon had recommended surgery on my right shoulder. My sports medicine doctor recommended I go to Boston for a second opinion (I lived in Maine at the time).
The appointment in Boston was an emotional roller coaster. First, I saw a fellow who seemed to think there was nothing wrong with me or my shoulder. He said it was a little hypermobile, but this is not unusual for shoulders. Then I saw the attending. He had read the operative report from my previous shoulder surgery, which stated my connective tissue was of poor quality. He also measured my Beighton score. I scored a 9, the highest possible score. He said I probably had Hypermobility Syndrome and should never have another joint surgery. He said I would end up in a spiral of needing more surgeries, and the surgeries would never be able to help my problems. My mom and I left this appointment completely overwhelmed, but not surprised. As a biochemistry and medical biology major, I had done extensive research on hypermobility syndromes since the first mention of them. So many of the medical problems I was experiencing and the problems my mom had had throughout her life were explained by hypermobility syndromes.
We went back to the sports medicine doctor who had initially referred me to Boston to discuss everything. He had a lot of experience working with patients with Ehlers-Danlos Syndrome (EDS) and diagnosed me with hypermobile type. This was before the ACA was law, so he did not want to put it in my chart because of where I was in life. He worried I would be unable to get health insurance later in life. My mom’s EDS diagnosis shortly followed mine. I had so many emotions surrounding this diagnosis. I was relieved to have an answer to these problems, but I worried I would continue to fall apart. After my diagnosis, I started having more medical therapies to try to strengthen the muscles around my joints. I had to get better at time management to fit in more medical appointments around my school schedule, but other than that, my life did not change much initially.
The next summer I took an EMT class and did more triathlons. During my junior year of college, I started working part-time as an EMT. That spring semester, I had my first patella dislocation, which meant going to classes on crutches during a Maine winter. I also started having more severe immune dysfunction during this time. I had pneumonia multiple times during the semester, along with countless sinus infections. The following summer was one of the best, though. My husband and I started dating. I did a triathlon. It was a fun summer.
In my senior year of college, I started having frequent dizzy spells and occasional vomiting episodes. I was diagnosed with celiac disease during this time. I was very busy working, finishing classes, and long-distance dating my husband (then-boyfriend). After graduation, I worked full-time as an EMT. The next year, I got married and moved to New York City. Shortly after getting married, I had sinus surgery. Unfortunately, this was the first of what would end up being yearly surgeries throughout our marriage.
I worked as a full-time EMT in New York. It was one of my favorite jobs ever, but it was incredibly taxing physically. I absolutely loved my job, but my health quickly worsened. My asthma got much worse. I started regularly having severe asthma attacks, requiring trips to the ER. I spent my days off at doctors’ appointments. One day at work, we were carrying a patient down the stairs when I got incredibly dizzy. I told my work partner I needed to sit down and as I did so, I passed out. This led to a cardiac catheterization and electrophysiology study and dysautonomia diagnosis. Shortly after my fainting episode, I fell at work and had a serious ankle injury that required a total ankle and foot reconstruction. This surgery led to my first overnight hospitalization. I remember feeling so alone and out of place. Everyone around me was much older than me. I could not get out of bed or go to the bathroom without help, and this was a very unfamiliar feeling.
I recovered from my ankle injury and was able to return to work, but my body continued to struggle with the physical nature of my job. I had a lot of back pain from lifting and moving patients. I struggled even more with my asthma and had to be hospitalized for it at one point. My GI problems also got much worse. I distinctly remember driving to calls and having to pull over to quickly vomit on the side of the road. I had no idea why I was vomiting so much, and I was afraid to find out. I knew gastroparesis was a common EDS comorbidity, and I was afraid to be diagnosed with it only a year after being diagnosed with dysautonomia. I still had a lot of ankle pain. It became apparent some of the screws in my ankle were causing problems and needed to be removed.
Shortly after the surgery to remove the screws from my left ankle, I stepped off a curb wrong and seriously injured my right ankle and knee. This injury ended up being the end of my EMS career. The next 2 years would be the hardest of my life as I had multiple surgeries and literally fought for my life. I was diagnosed not only with gastroparesis but global dysmotility, meaning my entire GI tract did not work well and in fact, it was so severe I had to be put on total parenteral nutrition (IV nutrition) as my main nutrition source. I had a feeding tube placed as well. For much of this time, I was unable to leave my home without the assistance of someone else. I was unable to work.
Shortly after starting TPN, I started to feel much better and applied to and was accepted to a graduate public health program. Weeks before I was supposed to start the program, I had my first bout of sepsis. I had never felt so miserable in my life. Fortunately, all the classes for my first semester of grad school were online, and I was able to attend them. At the end of the spring semester, I was accepted to the epidemiology program. Unfortunately, at the end of the summer semester, I became septic again. This would be my worst episode of sepsis. I had multiple anaphylactic reactions to antibiotics during my hospitalization. I was hospitalized for almost a month. I do not take it for granted I survived that infection. Recovering from this hospitalization took months.
I was able to go to school part-time in the fall, but I struggled with missing classes due to my illnesses. One of my professors suggested I get established with the disability office to have accommodations for when I needed to miss classes or turn in assignments late. I found the disability office was more difficult to work with now that I needed more complex accommodations for an invisible disability than they were when I needed a simple arrangement after my thumb surgery. I eventually got everything set up, and it was so helpful to have flexible due dates and attendance.
About a year ago, I reached a level of stability with my health I had not had since college, and I was able to get a part-time job for the first time in nearly 5 years. Unfortunately, this stability was short-lived and a bout of sepsis at the beginning of this year set me back. I was able to go back to work after taking some time to recover. In about a month, I will finally be done with my master’s degree. Sometimes I get disappointed in myself for taking almost twice as long as most of my peers to finish my degree. But then I remember I am blessed to still wake up every day.
Throughout the last decade of being sick, I have learned I do not have much control over my physical health. I have grown so much over these years, and things I used to think were so hard are now incredibly easy. I used to hate needles. Now I give myself shots of blood thinners every day. Meanwhile, other things have gotten even harder. I now have a really hard time in the days leading up to surgery because I have had so many bad experiences with anesthesia I have PTSD regarding it. I have learned I must accept the challenges as they come and live the periods of relative stability to the fullest. And, yes, saying that is much easier than doing it.”
This story was submitted to Love What Matters by Elizabeth Fisher Smith of New York City, NY. 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.
Read more stories like this:
‘I see you refusing to give up your nights out with friends, your weekend bar visits. I see you, and quite frankly, I’m fed up. My life is on hold.’: Woman with chronic illness says ‘we are vulnerable and we matter’
Provide hope for someone struggling. SHARE this story on Facebook and Instagram to let them know a community of support is available.