It’s been a full decade since my symptoms first began, and while so much has happened (yet somehow also nothing at all), it feels like it was just yesterday. A little over 10 years ago now, I was what I would consider a generally healthy person, at least in comparison. The truth is, I really was never healthy, I just never knew I had so much underlying, besides my OCD, anxiety, depression, and IBS. Running in the background, without my knowledge, was Hypermobility Spectrum Disorder/Hypermobile Ehlers-Danlos Syndrome, Small Fiber Neuropathy, probably autoimmune disease, and who knows what else. Soon, the POTS would come, and it would knock me on my butt so hard, everything in my life would change. For better or for worse, I’ve learned a lot over the last 10 years, and I’ve become a stronger person.
The First Years — How it Started
I’ve told this story already, but since this is about the beginning, I suppose it would make sense to tell it again, as not everyone has read past posts.
It was the spring of 2012, and I was working at a decorative hardware company. Strep throat was going around the office, and I got it, as per usual (I always get whatever is going around– I’ve been like that for as long as I can remember). I went on antibiotics, and after the 10-day course of medicine ran out, I got strep throat again. Another course of antibiotics was prescribed. Then somehow, I got it a third time. In the span of a month and a half, I got strep throat three times.
My boss blamed me for it going around the office, but it was her family friend that gave it to me, then other employees after that. It kept going around and coming back to me like a boomerang. I finally got through the last bout of strep throat, and thought nothing of it. My doctor didn’t think anything of it, and I went to the primary care provider I was seeing then each time for a strep culture and for antibiotics.
Shortly after that, I went on a trip with some friends. When I got home, I had really bad swollen ankles– so bad that it looked like there were baseballs in my ankles. I went to my doctor, who just told me to eat less salt when I travel. It wasn’t taken seriously, and again, I moved on without questioning it at the time.
Fast forward to a few months later. My mom and I started going to a personal trainer together, trying to get in better shape. I had recently gained weight on an antidepressant, and I wanted to lose some weight and strengthen up. I stopped waitressing in the beginning of the year, but had been doing that for four years before.
While working out with the trainer, I was doing simple aerobic and cardio exercises, and I was feeling very sick instantly. I would get as white as a ghost, extremely lightheaded and dizzy, weak, nauseous, cold sweats, and feel like I was going to pass out. I was able to do weights, and that was it. My personal trainer suggested I see a cardiologist to make sure everything was okay, so I followed her advice and made an appointment.
The cardiologist gave me a stress test with an echocardiogram. The stress test lasted only a few minutes, but I had no idea that wasn’t normal at the time. The echocardiogram gave me a lot of chest pain, and I mentioned it to the girl who was performing it, but it was brushed off, as most things are. She told me it was not normal, but didn’t say anything to the doctor about it. I think when I mentioned it to the doctor, he just shrugged.
I didn’t know that the reason my stress test was cut short was because my heart rate went so high so quickly. I wouldn’t find out until about 2 1/2 years later that the cardiologist, who told me the stress test was completely normal and there was nothing to worry about, wrote in his notes that I was “deconditioned”. Deconditioning is often misdiagnosed when it’s really POTS, but I still hadn’t heard of POTS at that point, and again, I was told everything was fine.
There was no reason I should even be this “deconditioned”. I was a waitress only a few months earlier, walking up and down stairs with arms full of food and trays full of drinks. Of course the doctor didn’t look any further into it though, and just sent me on my way with no suggestions.
Since I was told I was fine, but was still unable to exercise without feeling like I was a second away from passing out, I just quit going to the personal trainer. I got a new job, and was thriving there for a while. I found my calling in this job, and was doing great. I was finally happy with what I was doing, working for a wholesale travel company and blowing my sales goals out of the water. I loved the industry I worked for, and saw a future with working in travel.
Then seemingly out of nowhere, in July of 2013, I got dizzy at work. It was so bad, I could hardly see straight. I was sitting at my desk, swaying as if I was on a boat. I left work early and went to a doctor’s appointment, because I was going to Jamaica later that week and wanted to make sure everything was okay.
My doctor didn’t know what it was, but I was given Antivert and I went to Jamaica. We thought it was possibly vertigo, and that’s what I assumed it was at first. The Antivert did nothing though, and when I got back from the trip, the dizziness was still happening. It wasn’t every day, but it happening every other day, and becoming more and more frequent as time went on.
When I got back, I went to an ENT who said that I did not have vertigo. Next I went to a neurologist, who diagnosed me with migraines before even evaluating me, based on me telling him I got headaches. He told me it would get better once the barometric pressure dropped. I learned later that I was in fact getting migraines, though, but not from this guy who didn’t even evaluate me before diagnosing me.
In the spring of 2014, I went to a rheumatologist, desperate for answers. At this point I was dizzy every day, and now every minute of every day. The dizziness was constant, and it was driving me crazy. I was diagnosed with fibromyalgia, which explained some of the chronic pain I was experiencing, but she had no answers for the constant dizziness.
I went back to my primary, unsure what to do next. Instead of doing a single test on me, or guiding me to a doctor who could help me, she said “There’s nothing you can do for Fibromyalgia.” Then she continued, saying the words no patient should ever have to hear, “Have you stopped to think that maybe it’s all in your head?” I was in shock. I had been seeing this doctor since I turned 18, for ten years at this point, and this is how I was being treated?! Not even doing one test, just suggesting it’s all in my head?! I was so hurt. I sat there crying at first, and then walked out of her office and never went back.
I wouldn’t be diagnosed with POTS for another 6 months or so, in November of 2014. I was diagnosed after my 2nd rheumatologist suggested I ask my new cardiologist for a Tilt Table Test, which instantly diagnosed me with POTS.
What I’ve Learned Over the Years
- Doctors don’t know everything
It didn’t take long for me to realize that doctors don’t know everything.
At this point, I’ve been to over 50 doctors and specialists, and I can’t tell you how many have never heard of POTS. It’s bad enough when they Google it in front of you (and yes, this has happened more than once), but when they pretend they know about it when you can tell they do not, that’s even worse. Doctors have huge egos, and they don’t like to be wrong.
I’ve been treated horribly from doctors, from being yelled at and belittled, to being literally kicked out of an office with threats of them calling security when I questioned their knowledge of POTS (this is another story for another time), to being medically gaslighted.
It turns out, I know more about dysautonomia than the majority of doctors, only because I am living with it, and have done my research. That should not be the case, but that’s what ends up happening when you’re diagnosed with a complex condition that is not taught in all medical schools.
Doctors are typically not taught about dysautonomia and POTS, and a lot of the ones that are generally only get a chapter in a textbook about it– not nearly enough to actually know and understand the complexities of a multi-organ disorder that leaves a lot of us completely debilitated.
If you feel like your doctor is not knowledgeable enough on the subject, or you get a bad vibe from them, do yourself a favor and move on as soon as you can. Take my advice on this– it’s not worth fighting with them over. Some doctors refuse to continue their learning after they get their medical degrees, therefore, they’ll never understand dysautonomia and POTS enough to actually treat it. Move on until you feel comfortable with the doctor you’re seeing, because although doctors are not everything and they don’t know everything, there are doctors who can be a big help, and they’re still necessary for us to properly manage POTS.
2. Be your own advocate
You know your body better than anyone– you’re the one who lives with this illness, and you’re the one who knows the ins and outs of your symptoms. Don’t let anyone mute your words, whether they do it with gaslighting or otherwise.
It’s important we be our own advocates. We must fight for ourselves, every step of the way. It’s unfortunate that we have to, but we do.
It’s a tale as old as time– women are not believed by doctors, while men will get a diagnosis and treatment years before women. Don’t believe me? Look it up. There’s numerous articles about it.
Years ago, we would’ve been thrown into a sanitarium, and before that, maybe even institutionalized for hysteria. These days, we’re simply not believed, and told it’s all in our heads.
In a recent study, researchers at the University of Copenhagen analyzed 6.9 million Danish people within a 21-year period. In connection to 770 different types of diseases, women were diagnosed an average of four years later than men. In the case of cancer specifically, women were diagnosed 2.5 years later than men, and in the case of metabolic diseases such as diabetes, women were diagnosed on average 4.5 years later than men.
Feel free to take a look at the rest of the article if you’re interested. The numbers are shocking, yet completely unsurprising as a fellow woman who has experienced it firsthand.
Want to hear some staggering statistics on POTS diagnosis? This survey from Dysautonomia International was done in 2013, but the numbers are probably similar today.
- The diagnostic delay in POTS is 5 years and 11 months.
- Only 25% of patients are diagnosed with POTS within their first year of symptoms.
- Before getting diagnosed, 59% of patients were told by doctors that their symptoms were “all in your head”.
- 27% of patients saw more than 10 doctors before finally getting diagnosed with POTS.
- 69% of patients were diagnosed with an anxiety disorder before getting diagnosed with POTS, when peer-reviewed research shows that POTS patients are no more likely to have anxiety than the general population.
Go to whatever doctors you need to, and don’t give up your fight for answers, diagnosis, and proper treatment. Don’t believe the doubt doctors may instill in you.
3. Take someone with you to important appointments
I’ve learned how important this one is over the years. When you’re going to important doctor’s appointments that involve complex terminology and treatment plans, it’s important to bring someone along with you for multiple reasons.
First of all, it’s hard to remember all of the information you’re being told when you’re on your own. I could never remember everything my doctors say to me, and I could never be present in the moment if I wrote every little word down. I do write down the important parts, obviously, but two sets of ears are always better than one.
Brain fog can also get in the way, making it hard to remember everything you want to bring up to your doctor, even if you wrote it all down. I’ve been there too many times, and missed my opportunity to bring up important things.
Secondly, it’s important to have a witness with you. As I mentioned above, doctors can gaslight us, and cause us to question our own symptoms at times. I know this has happened to me many times– where I wonder if I’m making up a certain symptom, or if it’s not as bad as I’m remembering, because my doctor doesn’t believe me, or is confusing me into believing I could be misremembering the severity of it.
The other person you bring along can corroborate you and have your back, confirming what you’re saying. I’ve also realized that doctors are less likely to gaslight you if there’s someone else with you. It doesn’t mean it won’t happen, it just means they may show you more respect if there’s someone else with you to give you that back up.
I’ve seen people say that when they bring a man into the appointment with them, the doctor treats them with more respect. How sick is that? That they need a man with them in order to be treated with respect and believed? It’s disgusting, but it’s also what women deal with every single day.
Having a second advocate is even better than just having one. Similar to having a witness with you who can corroborate your symptoms, a second advocate can help you advocate for yourself, not leaving any question behind about what you need and what you want out of your doctor’s appointment. Sometimes you might find it hard to speak up for yourself, and that’s where the second advocate can chime in and help you.
4. Friends and/or family will stop asking how you are
When you first get sick, they may ask how you’re doing. They may text, or maybe even call to check up on you. That stops fairly quickly, though. Everyone goes on with their lives, and it’s like they forgot all about you being sick 24/7. You’re no longer in their thoughts, or if you are, they don’t send you a message to tell you this. They simply don’t care about anything but their own lives.
Listen, we all know everyone has their own lives. We get it. But the lack of communication that happens when you get sick is heartbreaking for us. Everything in our lives has just changed, and on top of that, it seems like our friends and family have just lost all capacity to care.
It’s almost like empathy has an expiration date, and after a short period of time, it’s been used up.
Sometimes it feels like they don’t respect us, for whatever reason. Because we’re no longer able to be the active friends we once were, or maybe because we can’t work anymore. For whatever reason, their empathy has wavered, and so has their friendship.
I know I haven’t been the friend I can be either in recent years. While I’m there for my friends during their important events, and would do anything for them, I know I’m also not checking in on them as much either. I can definitely be a better friend, but sometimes it’s hard when you’re in constant pain and always feel sick, you rarely want to talk to people. But I still think I’m there more than some of the ones have been there for me, and that’s what hurts the most.
This will be a longer post at another time, but this had to be listed here because it’s definitely something you’ll learn the hard way when you get sick.
5. The ones who do show up will surprise you
As explained in #4, your friends and family may leave you disappointed. But there may be a couple of people who are there for you, or try to be.
The ones who reach out may surprise you, they definitely surprised me. They were friends who I had lost touch with over the years, or friends or even acquaintances I didn’t even speak to much, if at all– and yet they’re the ones messaging me and checking in on me. It’s absolutely made me re-evaluate everything and everyone in my life.
6. Time keeps moving, even if you don’t
Time will go by, first months, then years. It may feel like nothing has changed, when in reality everything has.
An entire decade has now gone by, and I have nothing to show for it but gray (silver, really) hairs, new wrinkles and lines, and a lot more pain and illnesses. Every month it feels like I get a new diagnosis, every day a new symptom.
And once again, this will be another (longer) blog post at another time, but to sum it up– I feel like I’ve remained stagnant, while everyone around me is living their lives. I’m not living, I’m merely existing, and just barely at that.
My friends get engaged and married. They buy houses and settle into their lives. They have successful careers and the ability to buy the things they want. They have a child, and then multiple children. They have beautiful families, and I’m still stuck, like I’m still in my early 20s. I’m worse off now than I was before I was diagnosed, and my life feels like it’s going backwards instead of forwards like everyone else’s.
Am I jealous? Yes and no. Not in a bad way, at least. I’m happy for every single one of my friends, and I love them and their families. But it doesn’t mean it doesn’t hurt.
These are the plans I had for myself. I’ve never even been able to have my own place to live, because I can’t afford to. I want my own home, I want to decorate with my own taste. I want to have children, and be a mother. These are things I still want.
Life has had other plans for me, though, and I’m stuck feeling like an old spinster who lives at home while everyone around them flourishes. Some of my neighbors probably think I’m weird, they don’t all know the full story (although some of them do, I have some great neighbors, and they have known me my entire life). But when the new neighbor that moved into the house next door is your age or younger, and there you are, living with your parents, it can’t help but sting, and and it can be embarrassing.
I love my parents, and I get along with them pretty well. Yes, we fight, but we’re 3 adults living under one roof. But I just want to be able to have the things any “normal” person would have, including my own space. I deserve to have my own place, to live in and decorate.
Chronically ill people just don’t get to have the same things as healthy people sometimes, and it really sucks. Plain and simple. So many chronically ill people are unable to get married because if they do, they’ll lose their benefits, including health insurance, and that’s just unfair.
7. Standing and walking takes a lot of energy
I never imagined getting so exhausted, so out-of-breath, and that my heart rate could get so high from simple things like standing up and walking a short distance. It takes so much more energy for us to do simple tasks than it does for the average person. Once you start experiencing it, it’s hard to even imagine life beforehand. I know I can’t remember what it feels like to be healthy, with energy, and an ability to live a normal day-to-day life. It feels like that was another person.
People may think it’s just anxiety, or we’re just lazy. However, a lot of people who develop POTS were athletes before they got sick, and in the best shape of their lives. That just proves that it has nothing to do with laziness or even deconditioning, it’s autonomic dysfunction that can happen to absolutely anyone.
8. You’ll surprise yourself
Living with chronic pain and chronic illnesses for the rest of my life is not something that I ever thought would be my life, but it is, and it will be.
Our ability to shine in even the worst conditions is really apparent at times like this. It brings out our greatest strengths. It may take a while for this strength to fully come out, and you may not feel strong (especially some days), but I guarantee you you are. You are stronger than you realize.
Your ability to deal with the symptoms and pain that come along with POTS is enough to prove your strength. Whenever you’re feeling like you don’t know if you can handle another day of it, just remember how far you’ve come, and how much you’ve dealt with. Remember how strong you are.
Science and biology were never my strong suit, so I constantly surprise myself when I am able to understand doctors and my diagnoses. It’s not easy, but it’s important to at least try to understand what your doctor is trying to tell you.
Before I was diagnosed, I had never heard of POTS, and I don’t remember ever learning about an autonomic nervous system in school. I’ve learned so much over the years, and I surprise myself each time I’m able to even begin to understand it.
9. Applying for disability isn’t easy, and it might take years
It’s almost been SEVEN years since I first applied for disability and I still don’t have it. Yep, you read that right, seven years.
I haven’t gotten a single paycheck since I left my job in the early summer of 2014. I first went to the lawyer to inquire about applying for disability in the summer of 2015, and the paperwork was submitted in October 2015. It’s now July of 2022, and I am still denied, and I’m currently in the court of appeals, waiting, praying, and hoping.
Most of you have read my story by now, but if you haven’t, it’s definitely an important read to understand why I’m so bitter about it. Read Part 1 of the saga here, and Part 2 here.
I know I talk about it quite a bit, but I am so angry about how I’ve fallen through the cracks, and how broken our system is. How is this allowed? What am I supposed to do for money? How am I supposed to live? Without my parents, I’d be literally homeless. My parents are 70 years old though, so they can’t keep providing for me forever. They don’t have pensions, and they don’t have a lot of savings. They work so hard, and they deserve to be able to relax like anyone their age would, but they can’t, and a lot of it is because of me. Do you know the guilt I have because of this? It’s immense.
10. You’ll be shocked by the amount of doctors who are uneducated on POTS
When the doctor or health provider you’re seeing is quite literally Googling POTS in front of you, it’s not a great feeling. I lost count of the amount of doctors who have never heard of POTS or even dysautonomia, which is the umbrella it falls under.
I’ve since learned that doctors are often not taught about dysautonomia, and if they are, it’s a paragraph in a textbook that is glossed over.
When I have to explain my own condition to a doctor, it’s a red flag. It’s how I know this doctor is not one I can stick with, and I have to move on. It’s part of the reason why I’ve been to so many doctors, because of how many don’t know about POTS or dysautonomia.
You’ll get used to it, which is pathetic, but it’s the truth. It’s one of the reasons why I’ve decided to be a voice and raise awareness. It is so needed for not only chronic illness in general, but POTS and dysautonomia. More voices mean more awareness, and that can only be a good thing.
Over the past decade, I’ve had my share of ups and downs.
Around the time I got sick, I began a new relationship, one that I was in for 7 years. I started a new job that I worked in until I had to leave due to the overwhelming symptoms that were taking over my body. I ended my last relationship and started a new one a year and a half later.
I’ve been diagnosed with more conditions than I could ever remember off the top of my head. I’ve been to over 50 different doctors and specialists, desperate to get answers.
I’ve gained so much strength, and become more comfortable with myself. I’ve grown. I’ve survived, which is what is the most important part. I’ve survived it all.
Am I where I expected to be 10 years later? Not even close. But I made it through, and I’m proud of myself for at least that.
