Have you ever felt like your advocacy efforts are going unnoticed? Reflecting on my own journey, I realized that advocating for oneself is a continuous process of learning and growth. It’s important to remember that while advocating for yourself, you should always stay informed and proactive. Understanding the cause, reason, and everything being done or not done in your medical care is crucial. If you ever feel that your concerns are not being addressed, don’t hesitate to ask for documentation of the refusal of treatment in your medical file. This can ensure that your concerns are taken seriously and that you receive the care you deserve.

Through several years of watch data a very clear has been painted as I’ve seen every degree of this crazy spectrum: nights spent awake, heart racing in the darkness; days spent bench-warming in my own house while my brain begged for movement; fibro flares after a minor sneeze; post-car-accident back spasms that made even turning over in bed feel like a mortal sin. My AuDHD brain wants structure, wants a rule book, but my autonomic system thrives on mayhem. So, I chase every data point, every pinch of salt, every sleeve of compression—juggling these variables like a circus act where the audience is my body and the stakes are syncope. While the Apple watch isn’t infallible by far type device it can point out some major patterns. This can mean you spot an issue before it compounds who knows how many times by the time it is caught by your doctor. When things don’t make sense look at different combinations of things your body is saying and you may just figure out what is going on. I finally did after reading a study on POTS and EDS which lead to the hypermobility studies and more studies on the other two now I am feeling better then I have in so long. I still have hell days and always will but any mitigation there and I am one hell of happy camper.

I didn’t begin to see these oddities as more than quirks until I volunteered to help a friend whose medical file was a tangle of POTS, Ehlers-Danlos Syndrome, hypermobility and Raynaud’s. She was fully diagnosed yet burdened by doctors who dismissed her symptoms as part of those symptoms. Sadly this type of issues is NOT uncommon blinding doctors to often and not looking deeper and therefor missing stuff. Come on it is bad when not only am I dealing with close friends and family as someone who knows their medical stuff as a patient advocate it has spread out to their friends and family. Worse? Even my friends in the USA are having me join in on their phone, or through a video call with them and the doctor. Did I mention I am Canadian and live in northern Alberta? A Canadian patient advocate helping with USA patient advocacy. When we are needed as often as I am and in more then one country things are in a bad state. Stop being a compliant patient ask WHY all the time and make sure you understand and feel comfortable with what is going on.

As I pored over textbooks, research papers and tilt-table criteria to advocate for her as to why these other things were NOT indeed the reason for what was gong on, a peculiar echo reverberated through my own medical history. Dizziness brushed off as stress, migraines that in 95% of the cases the trigger couldn’t be found chalked up to screens or caffeine even when I did not consume caffeine until about a year ago excluding the odd pop and tea here and there, IBS deemed “dietary whims,” or just idiopathic (no known cause just brushed off disrespectful excuses we are given when they don’t want to do the extra work) and mysterious bruises rang in my ears like unsolved riddles. Suddenly, every discarded symptom clicked into place: my chaotic heart, my queasy gut and my frail connective tissue to name a few were part of a single, unruly narrative.

It took less than a month from the day I first leafed through my friend’s medical history to the moment I found myself experimenting with compression in other areas of the body known to help with the symptoms, salt loading and fluid strategies drawn directly from peer-reviewed studies. My AuDHD brain, hungry for medical science and glued to unresolved anomalies, became the perfect detective. You see my mind couldn’t let go of the symptoms that didn’t match with the current diagnosis so it is turning it over sometimes for years until I figure it out. I am real bad with medical stuff for this one especially. Sometimes the way those who are neurodiverse look at things can have an extremely accurate pattern recognition skills. I can advocate for people and not miss a beat or be wrong as long as I have a passing familiarity with half the terms used or even just the body aspect in question such as blood cell counts leading to a passing familiarity with all the other values in blood work. Oh, and they are correct or correct enough to get the doctor doing more or end up on the wrong side of gross medical negligence issues this can make a doctor loose their license. Part of it is how I phrase things though to when I am not 100% sure of something that will not just spare their whittle feelings and pride but get them to do their job. No one questions the desire to know more about what is going on the patient side of things or patient friend or family member that is there. In fact they aren’t questions but guiding statements that they answer and give you the information you want that they may be trying to redirect away from. They just answer them; it also indicates at least a passing familiarity with the field itself most often a colleague of some level of training which scares them because they wonder what you know and don’t know. Turn the game on them is a fun tactic. Where others saw isolated ailments, I saw patterns—gravity’s cruel trick on a vulnerable autonomic network. Now, as I type with my hypermobile fingers, each keystroke echoes a pulse that I once resigned to “just anxiety” but now know as my body’s loud call for help.

I realized, had been chiseling away at my connective tissue the whole time, even as I performed a casual one-leg pull to my forehead or bent at the waist to lay my palms flat on the floor without bending my knees—a feat I mastered on day one of dance class, leaping from tap to jazz to ballet with no stretch discomfort, only amused stares from my classmates. You see certain stretches I would do easily and other’s had to work at getting to over time such as the bendiness in some dancers but in me the fact I could do it the first attempt pointed to not-so-great possibilities.

You see the body keeps count in more than just connective tissue and data points. For those with EDS, POTS, Raynaud’s, and pronounced hypermobility, the boundaries of movement often blur in curious ways. There are entire stretches—movements meant to gently coax muscles and fascia awake—that for us require almost no coaxing at all. I’d watch classmates gingerly reach for their toes, faces scrunched in effort, while I would, without the need for warm up, lay my palms flat on the floor, knees unbent, as if gravity simply bent for me. In dance studios, yoga classes, Pilates or gym warmups, poses like standing splits, deep forward bends, even full chest-to-thigh stretches, were never a challenge; my body slipped into them as if they were my natural state, and all the while, I felt nothing—not even the faintest pull or burn that everyone else seemed to chase.

These seemingly effortless feats—pulling a knee to my forehead, folding at the waist with my arms reached out as far as physically possible over crossed legs without feeling a stretch with no protest from ligaments, executing balletic arabesques or backbends without a wince—were, for years, points of pride or playful party tricks. I didn’t realize they were also signposts, quietly pointing to the laxity woven through my connective tissue and the autonomic quirks riding beneath it all. The ability to achieve these positions without warm up or stretching, and without even feeling the stretch, is a hallmark often shared among people with EDS, POTS, Raynaud’s, and other forms of hypermobility. What brings relief and challenge to others—a deep hamstring stretch, a shoulder opener, a classic quad pull—offers no resistance, no tension, just silent confirmation that our collagen is not like theirs.

Of course, this flexibility is a double-edged sword. The absence of sensation in these stretches means important warning signals might go unnoticed, leading to overstretching or joint instability. Still, it’s hard not to marvel at the ease with which a hypermobile body can flow through routines that others need months of training to achieve. Yet, that very ease is what complicates diagnosis and care—doctors and therapists, unless familiar with these conditions, may assume that lack of pain equals lack of problem. But the truth is, our bodies are quietly accumulating micro-tears, and our nerves can be just as unanchored as our joints.

I learned to celebrate the grace but also to respect its risks: focusing on strength and stability, listening for subtler cues—the odd pop, the hint of fatigue, the lingering ache after a too-easy split. Where others saw a party trick, I began to see a clue after helping my friend; where others felt a stretch, I learned to watch for silence, and what it might mean. For those of us with EDS, POTS, Raynaud’s, or hypermobility, the real stretch isn’t just physical—it’s learning to interpret a body fluent in movements most will never know, and to honour the message in the absence of sensation.

There was also the hit-and-miss parade of mast-cell activation: hives erupting like angry red volcanoes, a suspected allergy you’d never pin down because next week you’d eat the same food and be fine. Year-round sneezing fits that begged for an inhaler, yet spirometry couldn’t explain it. EDS, IBS, hyperhidrosis and now this POTS suspicion weaving a tapestry of autonomic dysregulation.

Among the most elusive and unpredictable threads running through this tapestry of symptoms is the cascade of histamine and mast cell activation. For me—and for many with EDS, POTS, Raynaud’s, or pronounced hypermobility—this hit-and-miss parade of mast-cell mayhem can be as disruptive as it is mystifying. Hives can erupt without warning, angry and red, seeming allergic reactions that defy logic because the same food or environment might be harmless the next day. The uncertainty is relentless: year-round sneezing fits that beg for an inhaler, skin flushing at the faintest provocation, or a sudden swelling that vanishes before you can even get to a clinic. Spirometry and allergy panels return inconclusive or normal, leaving doctors stumped and patients exhausted.

What complicates matters is how mast cell activation can blur its edges with so many of the overlapping conditions. It weaves through IBS flare-ups, unexplained migraines, mysterious bruises, and even the infamous postural spikes and crashes. The body, in a sense, keeps the score not only in tender joints and erratic heartbeats but in every episode of itching, swelling, and gastrointestinal rebellion. Sometimes, it feels as if my immune system is an over-caffeinated security guard, sounding the alarm on shadows—hyperreactive, unpredictable, and easily triggered by stress, temperature shifts, or seemingly nothing at all.

Recognizing these patterns—tracking which foods, environments, or stressors precede a flare—became another data-point in my detective work that I am starting to watch. Antihistamines, low-histamine diets, and mast cell stabilizers may become just as important as compression and salt. Where some see only allergy, those of us living with chronic autonomic dysfunction know it’s a much deeper narrative, threaded through every system, every odd reaction, sometimes every day. In the end, understanding the role of histamine and mast cells has become essential—another layer in the complex puzzle of living with these intertwined syndromes, and another reason self-advocacy and vigilance are so critical.

And so here I am, heart pounding as I type these words, racing through a first-person chaos writing that spans cardiology textbooks and midnight epiphanies. I’m stitching together my spikes and tumbles, my saline miracles and compression victories, my hypermobile souvenirs and EDS-spiced connective tissue oddities, all in pursuit of a single truth: that adult POTS can be measured in beats per minute but must be lived in every breath, every trembling step, every sweat-slicked summer afternoon.