A closeup of a male doctor's hands, writing on a clipboard.

To the doctor who finally believed me,

As a young female at the tender age of 15, I had the world ahead of me with no idea that life could be full of struggle. I was a freshman in high school, in the best shape of my life, doing the best I ever had in school – when in a split second my world began to shatter. It was November, and I was on the phone with a friend while laying in bed when I realized I had to use the bathroom. When I stood, the room went black like I was stuck in a tunnel and had no way out. I woke up on the flood of my bedroom with my parents surrounding me. This wasn’t the last time I would ever faint.

My parents didn’t think anything of it. They got me back in bed and set me up with some water thinking the cause of this episode was simple dehydration. However, when two days pass and I still couldn’t sit up without being dizzy we went to my doctor. While there I had my first electrocardiogram, which showed an abnormally fast heart rate and I was referred to a cardiologist. By the time I saw this doctor I had fainted over 30 times and had been to the emergency room many times with no answers. Without running a single test, this doctor dismissed me. My parents were told I wanted attention and if they just didn’t pay attention to me when I fainted, I would stop.

I wish that was the case, but the fainting continued. We saw a second doctor who at least agreed I needed some testing done. However, when all the tests came back “normal” aside from tachycardia (that fast heart rate) they too thought I was making it up. They suggested I needed therapy. Honestly, if I was them I would have thought I maybe I was making it up too. Who hopes for something to be wrong? The doctor would come into the room and say another test was normal, that was another thing ruled out, and I would lose it. Of course I didn’t want to be sick, but I wanted validation because even I began doubting myself.

I spiraled into this depression at age 15 because I couldn’t stand without fainting. Was I making it all up? Was there really anything wrong with me? I felt guilty for making my parents take me to doctor after doctor who all told us the same thing; there was nothing wrong!

Finally, in February, my parents pulled out their big guns and took me to a big hospital out of state and promised me that even if nobody else believed me, they did. They promised me they would keep searching until someone listened – and eventually someone did. I remember I hated doctors at this point. I thought nobody could ever help me. I thought I would be living the rest of my life constantly fainting when my body changed positions. Until my new cardiologist mentioned postural orthostatic tachycardia syndrome (POTS).

He explained to us what POTS is and that I wasn’t making any of my symptoms up. He did a poor man’s tilt table test on me in office, which consisted of taking my blood pressure and heart rate while laying, sitting, and standing and watching what happened. Then I was sent to a lab to have an actual tilt table test which was just a fancy version of the test done in office.

Just 20 minutes and two tests later spent with a doctor willing to listen, and I was diagnosed with postural orthostatic tachycadia syndrome. It is a form of dysautonomia which is a dysfunction of your autonomic nervous system. Basically the system that controls everything you don’t have to think about. When I stand from a seated or prone position, I have a lack of blood getting to my brain because of poor blood volume and my bodies inability to properly constrict blood vessels. This causes me to faint. Everybody has this feeling sometimes when they stand too fast or are standing for a long time when they are hot. The problem is, my body feels this way all the time. Medication, proper hydration, salt therapy, and light exercise has helped tremendously. Sometimes I can go months without fainting, which is a miracle from where I started.

A girl in a hospital gown and bed, with a dog Snapchat filter on her face.

Since my POTS diagnosis I’ve received many other chronic illness diagnosis which have altered my life even more so than what my POTS did, but I’ll never stop fighting. My doctor has told me that I had many things going against me, which made it hard to get my diagnosis.

1. I am a female. Females are less likely to be taken serious from medical professionals due to what in the past was “hysteria.”

2. I am young. People think I can’t possibly feel as bad as I claim I do because at the time I was only a teenager, and well, teenagers just don’t get sick right?

3. My illnesses are all invisible. If someone isn’t trained to see what is going on with me, they simply can’t. People like to believe what they see, and it’s hard to believe what can’t be seen. My doctor called this the “trifecta.” Because of this, young woman have the hardest time finding answers.

So thank you doctor number five. I never thought I would have a life because I couldn’t even stand. You believed everything I said and you gave me my life back. You helped me get back into sports and school and “normal” teenage things. You were there through every high and low and I can’t thank you enough. We need more doctors in the world who listen and believe. We need more who are willing to try multiple treatments until one begins working. We need more doctors like you.

Love,

Your patient

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Before I became chronically ill, I had the job that I dreamed of, I traveled to the places I wanted to visit, I went out whenever and wherever I wanted, and I made many friends and went out with them. I did all of these things without a second thought, without worries, without fear that one day I can’t do them anymore.

When I became chronically ill, I started to have this understandable fear of missing out (FOMO)… missing out on seeing my friends, on jobs opportunities, on visiting family members, and on traveling to new places. Basically missing out on everything I used to do, missing out on everything a young adult usually can do in their 20s, but I can’t do.

This a real fear to any chronically ill person, and it’s an awful feeling – especially for young people. Your 20s is the time when you have to take care of yourself and build your future, and also to have the time of your life. But, when you’re ill, everyone around you is living their life and working on themselves – and all you can do is stay at home and do nothing and watch life pass you by.

I would like chronically ill people like me to know that even if we’re missing out on many things, we still can live and enjoy other things in life. We can enjoy things we didn’t pay attention to before. Everyone of us is different, so everyone has their own things that they can still enjoy and able to do.

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Quick! Name a body modification your parents would never let you have. Is it a tongue piercing? Lip? Nipple? Other… places? What about mid-sternum? What about a weird, alien looking egg that sits right under your skin?

I, for one, see my port-a-cath not as an alien egg – but as a kind of Tony Stark-esque reactor.

Every week, three times a week, I stab myself in the chest with a needle. Monday, Wednesday, and Friday. I receive 1.5 liters of Saline fluids via a pump I carry in a cute holographic backpack. When the pump is going, I tell people I’m a robot getting my robot juice. They laugh, I sigh because it’s easier than explaining how the Saline fluffs up my low blood volume and keeps me from fainting every time I stand up because as soon as they hear “heart rate increase” they think it’s a heart problem.

Psst… it’s a neurological condition.

So here’s my two cents to anyone looking into, living with, or about to receive a port-a-cath.

It will change your life.

No longer will you be tied to a pole for over four hours as gravity slowly pulls the liquid into your veins. You’re free to walk around! That magic pump will be your best friend.

When/if you learn to access yourself, you’ll feel a bit unstoppable. I mean, who wouldn’t? You stick a needle into your own chest! (Don’t forget that you’re only human.)

The writer standing with a backpack on, wearing a port.

Tegaderm and all other adhesives are evil, apologize to your skin.

Don’t pull off your surgical glue… even though it’s super satisfying, you could pull open your healing scar. Just gently itch around it and trim any edges with nail scissors or nail clippers.

And finally, if a little kid asks what the tube coming out of your shirt is… say you’re Iron Man.

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Being diagnosed with postural orthostatic tachycardia syndrome (POTS) just over a year ago was a shock. I entered the doctor’s office assuming I was being silly and I left with a diagnosis, a help sheet, and so many questions. I remember frantically searching the internet for the life expectancy of someone with POTS (spoiler alert: it’s the same as, or even higher than, the typical average – depending on which articles you use). Hours were spent trawling through scientific journals and charity resources, as well as some “fake news,” to discover what caused POTS and how I could fix myself. Unfortunately, it seems I can’t.

There isn’t a surgery or a course of treatments or a quick-fix medication to take. When I discovered this, my heart dropped through the floor. How could there not be a cure? Was I just supposed to give up any chance of the life I had anticipated having? Utter despair.

However, after moping and crying and hunting for a magic medicine which would heal me, I realized something. I was flicking from tab to tab on my browser, reading page after page, but I wasn’t understanding how POTS impacted me. I didn’t take the time to consider my worst symptoms and practical measures which could improve them. By ignoring the suggestions for improvement and focusing on the onslaught of new information and the minuscule chance of a cure, I was robbing myself of the opportunity to improve – even slightly. My outlook changed immediately. I re-visited websites and noted down their tips for managing POTS instead of the most common symptoms. Rather than complaining in Facebook groups, I asked what successful adjustments the members had made and experimented with them.

I’ve discovered that there are changes I can make to minimize my symptoms – so that, rather than being greeted with static upon standing up, I now just wobble.

It hasn’t been easy. Like the thorny devil lizard, which hydrates through its skin in sweltering temperatures, I’ve had to adapt in order to cope. I now drink more than three liters of water each day. In my bag, there’s now a packet of crackers to increase my salt levels if necessary. Utilizing the spoon theory allowed me to explain my energy levels to family members; I could tell them how I felt without it being misconstrued as simply “tired.” They no longer had to attempt telepathy to understand how much more I could cope with.

Sometimes, life gets in the way of my carefully curated management plan. Due to a late night, being too rushed to drink my water, or merely chance, I have days when I regress to my earlier self: too afraid to stand up, too frightened to look past the statistics and to just try. On those days, I revert to doing whatever is necessary. I hide away from the world. However, I know that I can – and will – emerge from the dark and return to relative normalcy. Adjustments have been made. My life may not be what I had anticipated, but it is still so worthwhile.

I know that I may not ever get better. I also know that I can improve more than I thought possible.

Follow this journey on A Side of Spoons.

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I am getting married next month and have pretty severe POTS, but it has not stopped me from enjoying this time being engaged! I’d like to share some tips with you all about how to plan a wedding while dealing with this lovely condition.

1. Prioritize.

Put more time, energy and finances towards things you really care about. For me, a couple of those things entailed finding the right photographer and videographer who would capture these memories for a lifetime.

2. Consider adding chairs or a bench to your theme for you and your fiancé to sit on during the ceremony.

Unnecessary time on your feet might trigger a fainting episode, if syncope is one of your symptoms. Save your strength to stand for the vows!

3. Recruit reinforcements for your bridal fittings.

When attending a bridal fitting, have “spotters” and “stabilizers” to help keep you steady while the tailor is pinning your dress. In the case of an episode, it’s good to have a couple people there to catch you. I fainted at my fitting a couple weeks ago and luckily, I had two women on either side of me to break my fall. They now know to work extra quickly with me and they keep Gatorade, salt, washcloths and nuts close by.

watercolor painting of a woman fainting at her wedding dress fitting
Credit: Ashley Hartman

4. Don’t get too caught up in the minute details.

It will only stress you out when things go differently than you expected them to. Have fun with it, and save the stress for the bigger things that really matter. You don’t want to add extra stress to yourself since that tends to exacerbate our POTS symptoms.

5. Ask for help.

If you’re like me, you may like to do just about everything yourself. Trying to do every little thing will be very wearing on your health. Chances are, you have friends and family who are willing and honored to offer their time and services to help the planning process and day go smoothly. It can be hard asking for help sometimes, but I’ve had to get over that during this engagement season. People like an opportunity to serve, so let them. And trust me, their help really does go a long way!

6. Pause.

POTS or not, I suggest anyone planning a wedding take this advice. You need days where you don’t think about anything wedding-related or make any progress. Take time to yourself to just relax. This is an exciting time and you want to enjoy it as much as possible.

7. Coordinate with the rehearsal dinner and wedding venue regarding room temperatures.

You’ll want to avoid getting overheated, so ask the venues if they wouldn’t mind keeping the rooms on the cooler side.

8. Do what you can when you can.

If all you’re able to do one week is lay in bed, perhaps work on writing a special note to your partner, or call to schedule a nail appointment. Don’t push yourself too hard or you’ll set yourself back. And ask for help if you’re having a lot more flare-ups during this time.

9. Assign designated people to remind you to sit down and take breaks throughout the day.

Make sure some friends or family are there to give you a signal to take a break. I’m referring mainly to the prep time before the event happens. It will be harder to take “breaks” once the wedding begins, but you want to make sure you are able to enjoy yourself and get your dance on so it’s important not to do too much prior. Pace yourself and don’t overdo.

10. Lie down with your feet up the morning of before getting ready.

Think of your body like a cell phone. If you want it to last the whole day, you need to charge it. If you don’t take a little extra time to build an energy reserve in the morning, you may run out of battery before the event is over. Rest, feet up when you can, salt, water and snacks.

11. Wedding Day: Drink plenty of water (for patients with POTS, this typically means two to three liters), consume extra salt and eat snacks!

Stay hydrated, salt up and eat throughout the day. You might get nervous during the wedding dinner and not eat much, so make sure you’ve eaten enough salty things and have consumed enough calories prior to this time.

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I was officially diagnosed with dysautonomia the Friday before Memorial Day weekend of this year, but I have had it since I was a child. I also have postural orthostatic tachycardia syndrome (POTS). If you’ve never heard of dysautonomia or POTS before, no worries, I’ll explain. But before I do, I’ll give you a little background on my journey to diagnosis.

I’d grown up getting sick a lot, and I mean with a variety of sicknesses… scarlet fever (throwback to pioneer times), reflex sympathetic dystrophy (a nerve disorder that started one day in my left foot while I was in the fourth grade), a rare strand of E. coli, and I could go on. I suffered from four concussions throughout my teenage and young adult years, which I believe contributed to my ongoing issues with migraines. My Junior year of high school, I accidentally consumed a little of the local water in Mexico, which turned into three years of excruciating stomach issues and lactose intolerance.

Fast forward to college. I went from fainting once a semester to once a month to once a week at its worst. I would get no more than a three second window to alert someone I was about to faint when an episode was happening. I’d been to the ER several times, wore a halter monitor for a month, doctors ran many EKGs and still, the doctors could not figure out what was happening to me. I was told to salt my foods, drink more water, wear compression socks and perform weight bearing exercises. Let me tell you, this did not do the trick.

I couldn’t function and had no choice but to take a semester-long medical leave from school to figure out what the heck was going on.

Finally, as a sort of “last resort” my cardiologist ordered the tilt table test, where he could witness me faint. I did and so it gave me the criteria needed to get started on a medicine. Midodrine and I had five good years together where most of my symptoms were managed and the fainting was fairly controlled. And then, earlier this year, it stopped working for me completely.

For the last eight or so months, I’ve been struggling again to find the right medication and treatment plan and have learned it is not a simple fix.

Dysautonomia is a malfunction of the autonomic nervous system. My doctor told me to think of the autonomic nervous system as the “automatic” nervous system, since it controls things we don’t think about such as breathing, body temperature regulation, blood pressure, heart rate, and digestion.

And then there’s POTS, a form of dysautonomia, which is a condition where your heart rate can jump 40 beats per minute (BPM) or higher when transitioning from a supine position to sitting or standing, and then your blood pressure drops and you feel awful. Symptoms include things like dizziness, lightheadedness, fainting, chest pain and shortness of breath, nausea, exercise intolerance, inability to regulate body temperature, shaking, lack of concentration, heart palpitations, brain fog, and it goes on.

A person with POTS may experience several or even all of the following symptoms:

1. Fatigue

2. Weakness

3. Fainting

4. Shortness of Breath

5. Chest Pains

6. Indigestion

7. Nausea

8. Headaches/Migraines

9. Heart Palpitations

10. Exercise Intolerance

11. Pre-Syncope/Near Faint

12. Inability to Stay Hydrated

13. Dizziness/Lightheaded

14. Vertigo

15. Sleeplessness and Night Sweats

16. Brain Fog

17. Reactions to Food

18. Increased Heart Rate

19. Random Body Pains

20. Acid Reflux

21. Ringing Ears

22. Cold Hands and Feet

Many of the symptoms I just listed are invisible, but they are very real.

I look perfectly healthy on the outside, but in the inside, I have dealt with all of the symptoms above. All may not be present every day, but I deal with a good amount of them on a daily or weekly basis. Really, unless you witness me faint, it might be hard to believe something is wrong with me – which makes it harder for many to empathize.

The joke us “POTSies” get is that we look great and sound great, so we must be great.

Dysautonomia International points out, “While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.”

So, what does it actually look like to have some of these symptoms?

Brain Fog.

Brain fog feels like being on drugs that make you really loopy and out of it, except in reality you are sober and the drugs rarely wear off. I deal with brain fog every single day and it is easily the most limiting symptom for me. I haven’t been able to drive for a while because of the inability to focus, see straight and for fear of having a fainting episode while behind the wheel. Imagine having to figure out ride situations to go to work, get to doctor’s appointments, social events, or anything else. I haven’t been able to work well because it’s nearly impossible to stay focused and fight the fog to get stuff done. Focusing for too long on the computer exacerbates all my symptoms and brings on migraines as well.

Brain fog also has affected my memory. I write everything down and set phone alarms to remind me of things throughout the day, because if I don’t, I lose the thought or I won’t get it done. I forget when I’ve taken my medication or if I’ve taken it at all, I leave my keys in the door, and I forget simple words in conversation because my recall and processing time is all wacky.

Migraines.

Light sensitive, noise sensitive and debilitating pain in my head. I’ve been waking up with these on the daily over the past few weeks. It’s tough enough trying to get out of bed when you’re completely exhausted, dizzy, and weak, but then throw a migraine on top of it, and it becomes nearly impossible.

Before and after POTS.

Dizziness and Pre-syncope.

Getting up quickly is simply not an option for me. Morning’s tend to be one of the most symptomatic times of the day. I “sloth” out of bed, which involves me slinking off my mattress slowly and then when I’m ready to stand, I grab hold of things around me to carefully hoist myself up. If I get up too quickly, one of two things typically happen:

1. I begin to feel light headed, get tunnel vision and begin to black out and sometimes faint.

2. I get bad palpitations because my heart rate just jumped 40 BPM higher than it was when I was lying down. My blood pressure begins to crash so it feels like my heart is working too hard, my breathing becomes labored and I often get chest pains.

Fainting.

Hot cold sweats. Tunnel vision. Sudden nausea. Weakness. And then it all goes black. Fainting is one of the most uncomfortable symptoms of having POTS. Plus, if I faint, it takes me an entire day to get feeling back to normal, my new normal that is. The last time I fainted a couple weeks ago, I could not walk by myself for the rest of the evening and had to lay in bed with fans, my legs elevated on my bed wedge, ice packs on my arms and water and salt by my side.

Inability to Exercise.

I used to run half marathons and work out nearly every day. Now I feel faint after walking just a mile or I get overheated. Working out is just not an option for me at the moment. I’m too weak and fatigued for pushups. Whenever I try and do any kind of cardio, weights, or even strengthening exercises, my heart rate speeds up too fast and palpitates so hard that I feel it might beat out of my chest. If that doesn’t happen, I get such a bad head rush or headache that I feel I might faint. I’ve been told exercise overall helps to manage the symptoms, but once you hit a point where it’s hard to exercise, it can actually make symptoms worse.

Failure to Regulate Body Temperature.

I get hot and cold really easily. I can get goosebumps when it’s 70 degrees out and I get overheated and feel faint even after sitting in a warm car for just a few minutes. I can’t be outside for too long in the summer heat, especially if there’s a lot of standing involved. This makes outside concerts, social events with friends, and barbecues without ample seating very difficult for me.

Not all patients with POTS struggle with the daily symptoms I experience, namely the brain fog, migraines, dizziness/pre-syncope, fainting, inability to exercise and failure to regulate body temperature. Fainting, for example, is only experienced by 30 percent of patients with POTS. I’m one of those “lucky” 30 percent, but it doesn’t mean you don’t have POTS if you’re not fainting.

Often, dysautonomia is linked to an underlying cause. There is no cure or standard method of treatment for all POTS patients. However, figuring out if there is something else going on and then treating that can help lessen the POTS symptoms.

I have been on medical leave from work for weeks. Soon I will be dropping down from a full-time employee to a part time contractor. I haven’t driven in over a month. I’ve started a couple new medications, but still have yet to find relief from my symptoms.

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