Exotic Particles.

[Image: A photograph of a blond haired woman, the fictional Samantha Carter, played by Amanda Tapping, in the Stargate franchise, on a blue grey background. I may have watched all episodes of all three Stargate shows and movies more times that I can count. source]

I don't have Postural Orthostatic Tachycardia Syndrome (POTS). I've never met the criteria. Well except for one fleeting moment in 2011, where a neurologist turned to me after doing an autonomic tilt table test and said, "You have POTS, well POTS Plus, but not really POTS." It was there for a nanosecond. But not really. The fact that two years later I had a pacemaker stuck in my chest to make sure I stay out of perpetual bradycardia (low heart rate) and it artificially pumps me up to 100bpm when it detects activity is clear evidence that even that nanosecond of POTSie membership is a long distant memory.

I began with a diagnosis of Neurocardiogenic Syncope (NCS) in 2007, which morphed into Orthostatic Intolerance (OI), which eventually morphed into Michelle's disease as my shoulder patting, pity-faced Neurologist and long term Cardiologist now term it.

I have a form of Dysautonomia, but it's one that doesn't fit neatly into any of the present subgroup criteria and is likely, though as my Neurologist points out not necessarily, related to whatever neuromuscular mess I have going on these days. But the autonomic side of the ledger is the one that has caused, and continues to cause, the most upheaval in my life. It is the one that stopped me working and driving. The one that left me mostly housebound and way too frequently drooling on the carpet or bathroom tiles, awoken by the loving and gross face and neck licking of a worried Great Dane. From my head to my toe I have autonomic symptoms, but 10 years down the track I have no real name and just increasing complexity and decreasing clarity. I am living with He who shall not be named.

It makes for a weird midlands of diagnosis and membership.

It doesn't make my day-to-day any better.

It doesn't make for easier management.

My Autonomic Nervous System in still shot.

It doesn't make for better, easier, milder or any of the more positive ways to describe the presentation of a disorder like this.

It sucks as much as any of the subtypes, and in distinct ways that those who have a concrete diagnosis to cling too, will likely never have to deal with.

There are simply some of us who will continue to have significant autonomic symptoms, a completely dysfunctional autonomic system, a formless form of Dysautonomia, who will never fit in the available criteria. 

It is Dysautonomia Awareness Month and I know that it's highly unlikely that people like myself will be represented by any of the major organisations. Admittedly, our weird grey existence does make us hard to advocate for. We don't fit the easy awareness raising paradigms. There are forms with clear guidelines, larger memberships and great momentum making awareness less complex. But there is no quick soundbite for people like myself. And a lack of voice and presence in the awareness game, means it is easy to think we do not exist....

....and yet every day I receive emails and messages from people like myself.

Ill, and despite extensive investigations, stuck in the no mans land of the vague diagnosis, and feeling very alone.

I'm not sure how to rectify the situation. It's much easier to raise awareness for discreet illnesses.

It's much easier to link in doctors, family or friends.

But,

the human body doesn't pay attention to consensus statements.

It doesn't pay attention to the nice neat guidelines set out for clinicians to understand, diagnose and manage.

If you'e ever watched one of the Stargate franchises, or any science fiction series, you'll have heard of exotic particles. You just know that when the plucky group of space adventurers try to find a new energy source there will no doubt be ramifications in the form of new and unpredictable exotic particles that threaten to rip the universe asunder.

That's how my body and the body of many others decides to break or malfunction. We are chock full of exotic particles. And unlike every Stargate episode, we don't have a Samantha Carter, Rodney McKay or Nicholas Rush to make sense of things and save the day at the last minute. 

When things go wrong, like say your ANS decides to go arse up one day, and your body decides to forgo a nice neat presentation instead kicking up a heap of left of centre symptoms, it can make life, including diagnosis, extremely difficult. With no label legitimacy is missing. Prognosis is missing. Finding your support system is incredibly difficult. And the solid ground you need to plant your feet and ride things out is still just a pipe dream.

When I look around at awareness, not just this month but all year round, it often feels like people like myself are forgotten. Don't get me wrong I have no issue with raising awareness for POTS, it needs it, desperately. There continue to be misunderstandings as to its effects on quality of life, misdiagnosis abounds, and treatment is still trial and error. But these issues plague all forms of Dysautonomia. And I wonder where those with other forms, and we of the exotic particles variety, fit in the awareness scheme of things.

The reality is that there are many patients, even those diagnosed with other subtypes, who are not getting as much airtime. There is more to Dysautonomia than POTS. The problematic situation where patients feel disappointment when they are diagnosed with another form, as if somehow they have a lesser form of Dysautonomia, is symptomatic of a focus on one subtype to the exclusion of others. Or that Dysautonomia is frequently thought to be interchangeable with POTS, despite it being an umbrella term covering many forms, or that no matter how many times I have written that I have a form of Dysautonomia that doesn't fit anywhere over the last seven years, people still think that means I have a form of POTS. POTS and Dysautonomia have somehow morphed into one entity, leaving many feeling as if, despite living with a form of Dysautonomia, they have no place in the discourse.

[Image: a tan umbrella with the word Dysautonmia written on it over a white background. Underneath the umbrella are a series of subtypes of Dysautonomia: POTS, OI, NMH, NCS, PAF, AAG, PanDys, MSA, FD. Infographic is from www.reflectionsofabear.com]

This is not to say that less well known forms such as Autoimmune Autonomic Gangliopathy (AAG) or other common yet less discussed form such Neurocardiogenic Syncope (NCS), don't get some attention, they do, but the predominant form continues to be POTS. Patients and doctors alike are becoming focused on this form, a trend repeatedly demonstrated in anecdotes in forums from around the world. And there is a frequent misbelief that it is more severe than other forms. In reality the more common forms of Dysautonomia such a NCS, POTS or OI, range from mild to severe, no particular form is outrightly worse than the others (NB certain rarer forms of Dysautonomia are more severe, for example Multiple System Atrophy (MSA) which is fatal) as all patients present with different levels of symptomatology, different levels of impact on their daily lives, and differing reactions to treatment. If you are fainting 20 times a day thanks to OH or NCS, and require a helmet and constant supervision, the impact on simple activities of daily living (ADLs) and quality of life is highly significant. For someone like myself who has no name beyond a vague Dysautonomia to cling to, I still continue to progress. My lack of nosology sadly not protective against further deterioration and loss of functioning.

Many patients are stuck in this weird landlessness, whereby, they are even less visible in a group of disorders that are inherently less visible and poorly diagnosed. 

I am lucky in that I have a platform on which to bang on about Dysautonomia awareness in my various social media channels. And I can bring awareness to people such as myself who are the Nigel No Friends of the Dysautonomia world. The not quite rights. Those who don't fit. The Weirdos. But I am one woman tapping away on her laptop, and I am concerned for the many who don't have the confidence to put themselves and their stories out there. Who are weighed down not only by illness but by feeling of not belonging and under-representation. The power conveyed by diagnosis of legitimacy, of guidance, and belonging, is one many patients whose symptoms don't correspond to current criteria do not have, and are unlikely to have in the near future. We cling on the edge of support groups and gather crumbs of knowledge. But seeing an official organisation embrace them, or I should say us, and our odd exotic particle spewing bodies would be extremely powerful.

I do want to say I have nothing but admiration for those running the various Dysautonomia organisations around the world. It's a tireless and frequently thankless job. Run primarily by volunteers who are often ill themselves. From my own experience I know how hard and draining it is simply managing a large FB group, which I had to step back from as my health deteriorated. I have been advocating for Dysautonomia patients in general for seven years now, through this blog, various social media channels, on TV and in interviews and as much as it is rewarding it is tough and downright exhausting at times. But I also feel a deep responsibility to speak for the large numbers of people who contact me feeling lost, confused and anchorless thanks to the pot luck way their symptoms happened to present. We are all in this together. Every patient of every subgroup even those of us floating in the ether knowing their grouping comes under the tile of Exotic Particles.

In the mean time and until we can find a Samantha Carter to understand and fix us, I will continue to advocate for those of us who don't quite fit.

After all, a quick look at the images representing the creation of exotic particles shows we are pretty spectacular and unique.

[Image: artists imagining of the creation of exotic particles at Cern in the Hadron Collider. Source]

Michelle

Given how speccy the creation of exotic particles, Katy Perry's Firework seems very fitting.