A Lifetime of Chronic Illness

When I think back to when my journey with chronic illness began, I typically say 2012 or even 2013, because that’s when my POTS symptoms first became apparent. In reality though, I’ve been struggling with numerous chronic illnesses almost my whole life. I never really thought about it that way until recently.

Let’s start from the beginning. Hi! My name is Jessica, but everyone calls me either Jess or Jessie. I’m a 36-year old from Long Island, New York, and I’ve had chronic illnesses longer than I realized. That will make more sense as you get to know my story.

It started with OCD symptoms when I was around 7-years old. We’re not sure if it was after Strep throat, but I used to have it pretty much annually as a child. I mention this, because of something called PANDAS. In the early 90s, when I was finally diagnosed with OCD at the age of 8, PANDAS didn’t exist yet. It wasn’t until a couple of years ago, well into my 30s, when my primary care provider brought it up to me and told me about it. PANDAS is Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep. Quite the acronym! Once we looked into it, we realized that there was a very good chance that this could have been my trigger, as my symptoms came overnight and not slowly. There’s no way to know for sure though, as it happened to me more than 25 years ago.

My OCD symptoms were pretty severe as a child, and really hard to deal with. Dealing with anxiety as a child is not easy on anyone, and not knowing anyone else that had it made it all that much harder. I would have sobbing fits just trying to get my socks on in the morning because they didn’t “feel right” in my shoes. The seams on socks became a big annoyance for me, as did a lot of other little things similar. My biggest compulsion as a child though was double touching, and that was one of the first indicators to my parents as well. If I touched something with one hand, I would have to repeat it with the other hand, or other foot, or whatever it was. This is something that still bothers me now and then to this day. Handwriting was another big trigger, and probably my biggest struggle to this day. I constantly go over letters repeatedly, and as a child I would erase a lot, sometimes ripping a hole in the paper. Teachers knew I had it, but instead of making it easier for me, they would make me feel horrible about it. They would tape my eraser so I couldn’t use it, or point it out in front of the class, embarrassing me. Things were a lot different years ago than they are today, and the sensitivity and knowledge just wasn’t there in the 90s.

When I was in 6th grade, at the age of 11 or 12, my stomach problems started. It started after a stomach virus, and never went away. I’ve had daily stomachaches every day since. I was diagnosed with IBS in 8th grade at the age of 13, after multiple tests ruling everything else out. They also said I had signs of ulcers, such as redness, and treated that as well. I was told IBS was a diagnosis of exclusion. Middle school was difficult for me for this reason, and my anxiety was worsening, which was worsening my stomach problems. It was a never-ending loop.

In high school, I did what I could to get through it all. My stomach issues never went away, and the anxiety, OCD, and depression were worsening. I would end up having a lot of absences throughout the years due to my chronic stomachaches and my worsening anxiety. Around this time, my sleep schedule was starting to change a bit. I’ve always been more of a night owl, and this was around the time it started getting worse. I was in 11th grade in 2001, and after 9/11 happened, my anxiety hit an all-time high. After the Christmas break, I couldn’t get back to school. My stomachaches were worse than ever, and my anxiety was just as high. I was fatigued and tired all the time, but doctors just told me that it was normal for a teenager, especially since I also had depression. School was never a happy place for me, as I was bullied and made fun of a lot, and it didn’t help how I felt whatsoever. I ended up being homeschooled from January of 11th grade until the end of the school year in June. I was determined to get back for my senior year though, and made it back to going in person in September. I made it through the year and graduated high school, then started community college in the fall in 2003.

I was working full-time and going to school full-time in college. Looking back, this is probably when I felt my best. I was the busiest I’d ever been, going out with my friends, and living my life. The fatigue would always hit me, especially after working a lot or going out too much, and sometimes there were times when I crashed from all of it, or had to take off a day at work or school because it was all too much for me. I still made it through though, and I worked hard during these years. While working a retail job at 18, I started getting bad neck and back pain. I thought it was from carrying heavy strollers and car seats once in a while at work, and my doctor sent me for an MRI. It showed herniated discs in my neck, and I was sent to physical therapy and to a chiropractor. It didn’t help though, and the chiropractor ended up doing more damage than help, especially to my neck. I stopped going after several months and just dealt with the pain, figuring there was nothing to be done.

I started waitressing, and my sleep schedule got even more out of control. I would work nights and sleep during the day. Work would make me feel extra fatigued, and I’d wake up the next day having a “work hangover”, thinking everyone dealt with this. I thought it was just me getting old, even though I was in my early to mid-twenties. I’d end up getting sick all the time, getting the flu at the change of every season. If someone got sick, I was always the one to get it. I had to get people to cover my shifts a lot for these reasons, but didn’t think anything of any of it at the time. Looking back, I think I definitely had an undiagnosed autoimmune disease.

After 4 years of waitressing, I quit to get some office experience. I was working at an office in 2012 when I kept getting strep throat. Someone I worked with got it, gave it to me, and it kept getting passed around the small office. I had it 3 times in less than 2 months.  Shortly after that, I began going to a personal trainer. I wanted to lose the weight that I’d recently gained from trying a new antidepressant. While working out, out of nowhere I was suddenly unable to do aerobic or cardiac exercise. I would try to and get extremely dizzy, turn pale white like a ghost, get cold sweats, nauseous, and feel like I was going to pass out. I had just been a waitress months before, and I shouldn’t have been feeling this way from basic exercise. My personal trainer suggested I see a cardiologist to make sure everything was okay, so I did. He ran a stress test and an echocardiogram, told me the results from both were normal, and sent me on my way. I still was unable to workout though, so I just stopped going to the personal trainer. I didn’t notice any other major symptoms, so I just went on with my life. Soon after, I started a great job that I’d been trying to get for years with a wholesale travel company. There was 3 months of training and then I started in the Reservations department. I was responsible for booking trips for travel agents’ clients, and I was better at it than I’d ever imagined. I’d always had a passion for travel, and I put everything I had into this job. My sales in the first year were $2.1 million, when my goal was only $500k. I was so proud of myself, and felt like I had finally found the industry I was supposed to be in. 

In July of 2013, I got dizzy at work out of nowhere. I was going to Jamaica that week to celebrate my one year anniversary with my now ex-boyfriend, so I went to the doctor to make sure everything was okay. She gave me antivert, which did nothing. The dizziness first started happening every couple of days, then moved onto more frequently, and eventually every day. Now I’ve been dizzy 24/7 since around the fall of 2013. After getting back from Jamaica, I went to a neurologist who diagnosed me with migraines (I had just assumed they were headaches). I then went to a new cardiologist, who did some testing but found nothing. I went to a rheumatologist who diagnosed me with Fibromyalgia in the spring of 2014. In early 2014, it was becoming hard for me to get into work with how sick I was feeling all the time. The head of HR suggested going on FMLA intermittently, taking off (unpaid) time when I needed it.  I only had 5 sick days before that, and had to accrue them (I’d earn 1 every 2 1/2 months), which isn’t exactly reasonable when you feel sick all the time. By the summer of 2014, I had run out of FMLA days and I had to quit my job. It was devastating to me, because although I knew I wouldn’t be there forever (the pay was insulting), I knew this was the industry I’d stay in. It felt like the universe finally found my place, just to take it all away from me. I asked if I could continue in a work-from-home capacity, but they said no.

I went back to my primary care provider, who I’d been going to since I was 18, and told her the symptoms had progressed and gotten worse. I was dizzy 24/7, had migraines all the time (I was getting them on a daily basis from staring at a computer all day at work), was so fatigued it was hard to get out of bed, and had a lot of body pain, especially in my neck and back. She didn’t suggest a single test to see what could be wrong, instead telling me to consider it was all in my head. I left crying, in disbelief that this doctor I’d been seeing for 8 years would treat me like that without even trying to find out what could be wrong with me. I went to a new neurologist who did a myriad of tests to try to determine why I was dizzy all the time, but the tests gave no insight into what could have been wrong. I was getting dizzier after eating, so my mom Googled it to try to see if she could find out any information. She came back with dysautonomia, which neither of us had heard of. At my next appointment with the neurologist, she mentioned the dizziness and finding dysautonomia on Google. He sternly said that it was a very serious condition, and I didn’t have it (without testing) and said not to even mention it. We put it out of our heads, and headed back to my rheumatologist for advice. She told me to ask my cardiologist for a Tilt Table Test. I went back to the cardiologist and asked for one, he replied that he wished he thought of that (well, why didn’t he?)

I went to NYU Langone in the Electrophysiology department, and they did the Tilt Table Test. I didn’t even know what I was being tested for, but I wanted answers. They did the test and immediately diagnosed me with POTS, a form of, you guessed it, dysautonomia. I had never even heard of POTS before, and thought they said “Pox.” Whoops! If the neurologist had actually done the correct testing and listened to our concerns, I could have been diagnosed months earlier. When I went back to my cardiologist to go over the results, I finally got the paperwork from the first cardiologist I saw a year and a half earlier, who told me everything was fine. In the results from that stress test, he wrote that I was “deconditioned”. Deconditioned, yet he told me everything was fine. Now I know I wasn’t “deconditioned”, I must have had POTS a year earlier. Two doctors who could have (and should have) caught it earlier, but didn’t. I didn’t know at the time that this would be the beginning of a long road with little treatment available. There are no FDA-approved treatments for POTS, and everything that they do use as treatments are just bandaids over a much bigger problem.

Since getting the POTS diagnosis, I’ve been diagnosed with other things. Over 50 at this point, which is just mind-blowing to me. It feels like every time I go to the doctor they diagnose me with something new. And all that body pain, especially in the back and neck? Hypermobile Spectrum Disorder/Hypermobile Ehlers Danlos Syndrome. It took me over 30 years to be diagnosed with it, something that should have been diagnosed decades before. It even took 2 geneticists to give me a proper diagnosis, but I still haven’t had any genetic testing to this date. I’ll have to see a third geneticist to do that, as the one I originally saw doesn’t take HSD/EDS patients anymore. I was also diagnosed with a Sjögren’s-like autoimmune, or as my neurologist calls it, “novel Sjögren’s”. I’ve also been diagnosed with Chronic Fatigue Syndrome, Delayed Sleep Phase Syndrome, Small Fiber Neuropathy, and a lot more.

You can click on the “Diagnoses” tab in the menu on the homepage for the full list of everything I’ve been diagnosed with. It’s…. a lot. For anyone. To think, I’ve been sick for years and told it was all in my head, and I started to believe it myself. I thought I was making it all up for a while, until I finally started getting properly diagnosed. Until I went to doctors who put their ego aside and took the time out to do actual testing on me, the very least I deserved. I’ve been to a lot of horrible doctors since, but I’ve learned to stand up for myself now, and I know it’s not all in my head.