My Story: Learning I'm a Zebra

As a kid, I loved being outdoors and trying out different sports and activities (though I was never very coordinated). I thrived in school and never wanted to stop reading. I would get sick a lot, and my parents struggled with what to do. I hated missing school but would feel so bad, I’d ask to stay home. I eventually got referred to an allergy and asthma doctor and found out I was allergic to… everything. Thankfully, I got put on allergy meds and saw some improvement.

Fast forward to high school, I still struggled with getting sick but had a better understanding of my body. I loved having things to do and played tennis, acted in musicals, competed in singing and piano competitions, and planned as many activities as possible with friends! Then my senior year of high school, I started feeling off. I was having daily headaches and lots of GI problems. There would be mornings I’d wake up SO fatigued, I could barely get out of bed. My family had been going through lots of changes, and I was struggling emotionally. My dad encouraged me to give it time because it’s probably anxiety. At the time, that advice frustrated me. I felt misunderstood and knew something was wrong with my body. Looking back, I know anxiety and trauma played major roles in my health. Recently, many studies have been done on trauma and pain, and scientists like Dr. Rachel Zoffness have found that "chronic pain and trauma occur together up to 80% of the time."

Despite being in a new environment and acknowledging that I had some emotional healing to do, my physical health didn't improve. I started having mini blackouts: If I stood up too quickly, my body would go weak, and everything would go black. In PE, I got docked on a fitness exam because my heart rate was too high. I was always a firm believer in arriving early to things, yet I struggled with being late to school and work because my stomach would act up or my body would just hurt. My grandparents decided to take me to a doctor for help. They took me to their amazing primary care physician, and he was determined to get to the bottom of it. I went to specialist after specialist, but no one found a concrete cause. After extensive work with a GI specialist, I got diagnosed with IBS. A neurologist said I just have anxiety. A urologist told me the pain was all in my head. A gynecologist told me I’m young and probably fine. I started doing psychotherapy my sophomore year of college to address my health from the mental angle. It helped tremendously with acknowledging my emotions, but I still continued to have health issues. My PCP eventually concluded that I have Chronic Fatigue Syndrome and recommended that I go gluten free to help with my inflammation. I did a ton of research on my own, as well, and got into yoga. My body slowly started hurting less, and my blackouts eventually went away. I still had some days where it was hard to get out of bed, or I’d have no energy. I accepted the fact that my stomach was just messed up. But I started to think that maybe my health problems really were from anxiety.

When I was 25, I started having breathing issues. I was teaching in a school with a mold problem (which I’m very allergic to), so I assumed it was an asthma/allergy flare up and made an appointment with an allergist. Sure enough, I didn’t do well on the breathing tests, so they prescribed me an inhaler. I used it for three months, came back, and showed no improvement on the breathing test. Three inhalers later, I ended up getting sent over to a pulmonologist, who discovered that I have obstructive pulmonary function. He ordered X-rays, a sleeping test, and another inhaler. I still didn’t improve, and he (because of course it was a man) told me it was just anxiety. Thankfully, the sleep specialist told me to get a second opinion, and she sent me over to a pulmonologist that she said would never give up on me.

Dr. Patterson turned out to be an incredibly devoted doctor. Even after ruling out all known causes of obstructive pulmonary function, he didn’t give up. He referred me over to cardiology and helped me get an appointment with Dr. Snapper, who is world-renowned for addressing dysautonomia. My OBGYN also referred me to physical therapy, which is how I first learned about Ehlers-Danlos Syndrome (EDS). I brought all this history to Dr. Snapper, and he quickly diagnosed me with hypermobility EDS and Mast Cell Activation Syndrome (related to my many allergies). He also ordered a tilt table test and sweat test, which showed I have POTS and diffuse neuropathy. I felt so relieved; after all these years, I FINALLY have answers! I was given medicines to try and had a more direct treatment plan to work on in physical therapy.

But then, I started having severe abdominal pain. I ended up in the ER twice and had to put all my new meds on hold. After normal blood work and a CT scan, the best guess was endometriosis. I had had period problems for years, so my OBGYN decided to go ahead and perform a laparoscopy. They found extensive endometriosis, but they also found signs of Pelvic Congestion Syndrome (PCS). I suddenly remembered that when I was 19, my GI specialist also saw PCS in an MRI and referred me to a gynecologist (the one who told me it was probably a weird fluke and that I was fine). My current OBGYN decided to send me over to a vascular specialist to better address the issue. This led to more tests and procedures, and I was quite shocked to hear that I have something called Nutcracker Syndrome (NCS).

The last few months have been very difficult. I had to stop driving because of severe motion sickness. I had to change my eating schedule because I stopped being able to digest properly. I had to discontinue my gym membership and physical therapy because I was in too much pain. I had to take a leave of absence from work because I was no longer able to stand or sit for prolonged periods of time and had zero energy. Due to finding a ton of collaterals, the vascular specialist explained I have probably had NCS for years and that my body has gotten to the point where it can’t function with it anymore. The solution? Surgery.