Missing in Action: Living with Autonomic Nervous System Disorder

Today, I read an article recommended to me from NPR about a young mother diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a form of autonomic nervous system disorder (Dysautonomia). Tears filled my eyes as I read the struggles of this woman’s endeavor - a struggle I know only too well.

I got my POTs and Dysautonomia diagnosis in 2021, after over a year of terrifying and terribly disabling symptoms. My diagnosis was able to be traced back to a March 11th, 2020 covid-19 infection that I was unaware that I even had. The illness was awful for about two days, and then I improved just like any other virus. My infection was mild and unremarkable.

Yet, 6 weeks later I developed strange and uncomfortable symptoms, including pre-syncope (almost passing out) up to 50 or more times per day, hair loss, nausea, fatigue, wrinkled fingers, air hunger, and more. I was first told I had a serious heart condition that could be fatal - three weeks before I moved 1,000 miles across the country. Needless to say, I was stressed, anxious, and terrified. I remember crying in the shower most nights that July.

Five years. The cardiologist who finally diagnosed my issues told me that my condition was considered ‘mild’ and I had a good chance of complete recovery within five years. May 5th, 2025 was five years. Five years have passed and I still have POTs and dysautonomia. Realistically, it’s likely a lifetime diagnosis.

It took me three years to finally accept that I was disabled; unable to do even a quarter of what I used to be able to do. The feelings associated with accepting my disability were almost as debilitating as the disorder itself. It left me feeling less than, primarily because that’s how our capitalist American society views the disabled. America: If you’re not productive, you’re not a person. Finding my way mentally and emotionally has taken at least five years - and I’m still figuring it all out.

The strangest part is that POTs and Dysautonomia are invisible illnesses that vary significantly from day to day. Some days, I am almost back to my baseline prior to diagnosis. Other days, I find it challenging to leave the house. It’s beyond frustrating to have a sometimes debilitating disorder one day that may suddenly temporarily resolve itself the next. This is the swinging pendulum experience of dysautonomia.

Lately I’ve been missing in action - I had a severe medication reaction which landed me in the ER and took five weeks to resolve. During that time, I went back to the emergency room for a prolonged viral gastrointestinal illness. Both times I required IV fluids and liquid potassium. The second time, my resting heart rate was 160bpm. My husband had to wheel me around in a wheelchair that day to keep my heart rate under 200, and I was bed bound the next day, attempting to support my autonomic nervous system to get itself regulated once again. It felt as though I’d run a marathon, when in reality I sat propped up in a wheelchair or laid up in bed for days.

What’s particularly intriguing is that because I have Dysautonomia, I can have a dysfunction of ANYTHING related to the autonomic nervous system. So, functions that are usually regulated automatically by the body can become disrupted. For example, a few days ago I spiked a small low grade fever for no reason. This happens intermittently because my body has difficulty regulating my temperature when flared. Heart rate inconsistencies are common. Tachycardia and palpitations are common. Exercise intolerance is common. Struggling to ‘get air’ happens frequently. Almost passing out anytime you sit or stand up is a ‘normal’ symptom of dysautonomia. It’s why I wear compression socks daily, and am supposed to consume 6,000mg of salt or more per day. Some patients require up to 12,000mg. Electrolyte, vitamin, and fluid ratios are all controlled to a degree by the autonomic nervous system. This week I was diagnosed with low B vitamins, as well as dehydration despite drinking tons of water because my body is flushing out too many vitamins and electrolytes due to my autonomic dysfunction. The carousel of instability circles round and round.

Even when I attempt to support my body through healthy choices, medications, supplementation, exercise, and making all the right decisions, I still end up sick. This is the reality of disability. The truth is, no matter what a person who has chronic illness does or doesn't do, they will still be disabled. That was an impossible thing for me to accept for a very long time.

Billboards, ads, marketing campaigns - they’re everywhere (on the internet, television, even at the gas pump) - and they tell us that if we just take this supplement or eat this food or do this exercise that we can control the outcome of our health. Not only can we control it, but these bombarding advertisements force the belief that we are actually 100% accountable for our individual health. This is ableist bullshit. No matter what I did back in March of 2020, I couldn’t have prevented my POTs and autonomic dysfunction, period. The idea that we are solely responsible for our individual health is a lie perpetuated by companies who see a massive money-making, cash cow opportunity to dupe the average American. A fantastic book about this phenomenon is The Wellness Trap by Christy Harrison.

Even though I know now that there’s nothing that could’ve been done to prevent my disability, I still struggle with feeling like I’m not enough. I still struggle to ask for help. I still struggle to find my place in a society that values productivity over humanity.

Right now, despair percolates in the back of my mind. I’ve been in a flare since I caught pneumonia last October. Will I be sick forever? Is my disability progressing? Am I being a good enough mother in the midst of all the illness and chaos? 

People ask if I’ve seen a doctor; if I’ve tried yoga; if I’ve done whatever xyz that’s helped them on their journey. While I appreciate the sentiment here, chronic illness is different. The entire purpose of labelling it chronic is because it never goes away, despite what one does or doesn’t do. Being real - I’ve seen at least 20 doctors in 9 different specialties. I’ve had echocardiograms, countless EKGs, nerve conduction studies, hundreds of blood labs, and the list goes on and on. In the first two years of my diagnosis, I tried every remedy available to me: exercise, daily walking, compression, yoga, qi gong, breathing techniques, meditation, supplements, and so much more, all to varying degrees of success - but NONE curative.

At the end of the day, radical acceptance is the only real cure. Accepting that this is my life, and that my need for control for decades as a coping mechanism has to go out the window. Living life now comes from a place of day to day, versus year to year or decade to decade. It’s moment to moment.

Coping moment to moment requires different supports for different times. On good days, I practice gratitude and do as much physical activity as possible, because I know that there are bad days on the horizon; days where exercise and gratitude are impossible. Finding that balance is imperative to maintaining my mental and emotional health.

Lately I’ve realized that it may be time to look into more equipment to help me along my journey: mobility aides. I’m thinking about getting a cane that transforms into a seat for the hot days of summer when standing becomes impossible. I’ve also considered a rollator for the same reason, but have difficulty coming to terms with using mobility aides that I’ve always thought subconsciously were exclusively for the elderly. Even I still struggle with internalized ableism.

Despite what my decision will be on mobility aides, one thing is certain: something’s got to give.

Unfortunately, I’ve already had to step down from 2 volunteer boards I served on due to worsening health issues. Another one will end soon, and I’ll just have one left - one very dear to me, but I have one even dearer - my volunteer position at the library. Prior to September, I’d been volunteering at the library for three years. It’s been 6.5 months since I’ve been on hiatus and I’m still unable to return. This loss pains me more than all the others. The joy I got from spending time amongst peers and books was indescribable, and I miss it dearly. Another casualty in the wake of dysautonomia.

Soon, I hope to be up and at ‘em again. I’m at about 70% now, which is better than I was, but not my best. Adapting for so long has been mentally and emotionally painful, but not as painful as the absence of human interaction. Many people make assumptions about me; about my disabilities. Some even question their validity, or if it’s ‘all in my head’. It’s not that I don’t want to see you - I can’t.

Energy is precious with dysautonomia, and when I finally begin to feel somewhat normal again, about a million obligations await. Typically, I get longer spans of time between crashes, but my doctor recently hypothesized that since I have had so many illnesses back to back since October that my autonomic nervous system hasn’t had enough true rest to return to baseline. She says to rest, hydrate with electrolytes, and reduce stress. The tried and true temporary remedies of Dysautonomia.

One last thing: if I could leave people with a few messages about my situation, it would be these:

1) Just because I haven’t reached out in weeks or months doesn’t mean I don’t care. I’d still like to see you, but understand sometimes it’s months before I can due to severe symptoms and energy debt.

2) These conditions are real and distressing. Try not to hold it against us that it comes up often, that we must sit down in odd places, take anti-nausea pills while waiting in line, or wear tacky compression socks with supportive shoes with every outfit. We think about our conditions everyday because we must in order to plan around them. Please be patient.

3) Anxiety and stress often accompany dysautonomia, as our bodies frequently release adrenaline at inappropriate intervals due to the dysfunction. Again, patience is a virtue.

4) It’s not disabled people who are difficult. The difficulty is being disabled living in an ableist society with an ableist infrastructure. Do what you can when you can to advocate for disability rights and protections. The truth is, most people become disabled at one point or another.

In the end, I’m sorry I’ve been MIA, but know that while I’ve been gone I’ve been doing my best to rest and heal so that I may enjoy being out in the beautiful world again. I hope to meet you there someday soon. Until then…