Next up for Dysautonomia Awareness Month 2016 is Devon who lives in a rural part of Kentucky in the US. It's been really lovely to share a lot rural voices this year. Whether it be here in Australia the US or any area of the world patients living in rural areas experience a lot of similar issues. Things like distance, lack of facilities etc can make life difficult when you're not ill, but add in chronic illness and it ups the ante. Thanks for sharing your story Devon.
My
name is Devon McCormick. I am a 33 year old female preschool teacher
from southern Kentucky. I am not married, but I have a boyfriend of
nearly two years. I was diagnosed 6 months after we started dating.
I
live in a very rural area. We have a Wal-Mart, three red lights, and
a Taco Bell. I live alone, but I have a very close relationship with
my family. I was diagnosed in April 2016 with hyper POTS at
Vanderbilt by Dr. Biaggioni. I was misdiagnosed prior to that. I
also have asthma, chronic allergies, and NCS. I have been sick since
March 2015. I have had NCS since I was 5.
[Devon pre-sick is pictured above. The picture at the beginning is of the is Devon once month after becoming ill.]
I
am a rural Southern Kentucky girl through and through. I wear my
pearls to my teaching job Monday through Thursday and Friday through
Saturday its school colors or UK blue. Sunday is church wear. We say
ya’ll and bless your heart as both a term of endearment and insult
without batting an eye. Life was good and simple.
My
town was so rural that the biggest event was the new Taco Bell
opening up. The nearest mall was 70 miles away. I had big dreams but
never wanted to leave. I am highly educated with a bachelor’s and
double master’s degrees in education. The ability to drive and
leave this town gave me the ability to become educated. I was happy
to teach in the elementary school I attended. I wanted to be the
best at what I did.
Life
was moving along well. My career was going well, my family life was
fine, and I was Miss Independent. My biggest dream was to attend
Vanderbilt and get my PhD. One day, I fainted. No big deal, people
faint all the time. I hit the floor. Something wasn’t right. I
just couldn’t seem to rally back from this. It was the first time
in my life I wasn’t able to come back from something. I have
always overcame every hardship and yet something as simple as
standing would knock me down. I had hit the wall.
Suddenly,
I couldn’t work anymore. I couldn’t drive. My mom had to move
in with me. She helped me shower, dress, feed myself, and even use
the bathroom. I was fainting 20-30x a day. A simple tilt test would
have revealed the answer. However, it wasn’t done correctly. My
grandmother worked for an amazing cardiologist who saw through the
misdiagnosis and gave me some medication that helped some. Thankfully
I returned to work and my mom was able to return home. I was still
weak and having seizures.
Finally,
I saw a top notch neurologist at Vanderbilt. He then referred me to
the autonomic clinic there. The correct tilt table revealed I had
hyper POTS. A simple beta blocker taken three times a day and
lifestyle changes began making such dramatic differences. After 13
months, I was able to drive again. I also started getting my
strength back. I always said I wanted to go to Vanderbilt. I should
have been more specific and said as a student and not a patient!
It’s
been 15 months since POTS entered my life. I am not the person I was
before. In some ways I am better! I am stronger. Nothing will stop
me. I will push on and persevere when others will quit. I teach
preschool full time. It’s exhausting for a healthy person, let
alone a chronically ill one. There are days when I am so tired I can
barely stand and am angry and sad. I question why this happened to
me. However, I will not stop!
Today's guest post for Dysautonomia Awareness Month 2016 comes from Siobhan. It's been great to read more submissions from rural patients this year. Living in a rural area patients face unique issues regarding access to care. As most regular readers know, like Siobhan below, I have to travel for the majority of my care as local specialists who are familiar with Dysautonomia are pretty much non-existent. Telehealth is one way we could improve this situation. I have a few doctors and allied health specialists who have been willing to conduct appointments via Skype or phone, but they are still in the minority. Having just read the stats on survival rates of rural vs metropolitan cancer patients it is clear that geography is a strong and sadly negative predictor of health across many conditions and part of that is due to access to specialist care from diagnosis to treatment. We have the technology to make the lives of rural patients easier, let's use it! (May be an area of personal passion). Thanks Siobhan for sharing your story.
Siobhan is in her mid 20s and lives in country Victoria with her family, who act as carers. She put a promising career in psychology on hold to become a full-time sickie. She enjoys sewing and knitting to soothe her soul. You can read more from Siobhan at chronicallysiobhan.wordpress.com.
Imagine
a day that begins at 4.30am. You drag yourself awake, get ready and
race to the station to catch the train to the Big Smoke. After a 3.5
hr+ train ride, another obstacle awaits - navigating the city. For a
rural dweller who is used to services a brief car ride away, the
public transport and taxi services in the city can seem overwhelming.
You somehow make it to your appointment in a far flung suburb, and
wait a few hours for the privilege of spending 10 minutes with a
doctor who tells you nothing you couldn’t learn over the phone. Now
for the long trip back home, arriving at the station at 10.30pm. You
are exhausted.
This
seems like a big day for anyone. Now consider how it would feel being
a person with a disability. Sounds like an impossible challenge - but
this is the only option for treatment for many rural and regional
patients.
Healthcare
in the country is patchy at best. In my home town of Warrnambool, we
do not have dermatologists, endocrinologists, and are soon to be
without a single gastroenterologist. There is one private
psychiatrist who charges $400 a session, no rebate available. We have
only just opened a regional cancer centre in the past month. Before
then, patients had to travel to Geelong and live in rented units for
the full course of their treatment, which could be upwards of 6
weeks. The emotional and financial strain on such patients is
immense.
For
those who have complex and unusual diseases, such as dysautonomia,
the situation is bleaker. Good medical care requires a relationship
with a team that will understands your condition and will work to
coordinate your care, from GPs to specialists, surgeons and other
practitioners. But if specialised care is so far flung as to be
administered hours away from your home town, the chance of a well
coordinated management plan is slim. This is if you can find a GP who
understands your condition at all - by want of being in the country,
many GPs miss out on working and sharing knowledge with specialists
who would otherwise be able to bring them up to speed on their
patient’s unique medical conditions.
And
as for those who cannot travel for treatment? I am such a patient,
and have been for 6 years. For many of these years, I was told over
and over again by doctors in town that there was no one, no one, who
would consult with me over the phone. I was told I had to travel the
8 hour round trip to a specialist in Melbourne. Considering most days
I couldn’t leave my bed, this was an impossible ask.
Luckily,
I have found specialists in Melbourne who will consult by phone and
Skype, and my health is much better for it. The prevailing attitude
in the city is still that country patients should and will travel for
appointments. I can only hope that medical professionals will
increase their understanding of rural and regional patients and offer
more flexible methods of treatment, such as Skype appointments, to
meet their unique needs.
I really love this guest post from Patti for Dysautonomia Awareness Month 2016. Patti discusses her experience receiving a hyperadrenergic Postural Orthostatic Tachycardia Syndrome (hyperPOTS) in her early 50's. We don't often hear of the experience of older patients so it's lovely to be able to share her story. I particularly love the compassion she has for other patients and the way she has reframed her experience in such a positive light. Thank you for sharing your story, Patti. Patti is a fifty-four year
old woman who developed hyperadregenic POTS at the age of fifty-two.
She is now housebound and reads, reads, reads. Prior to that she was
a map librarian for several years. She then completed a PhD and was
a lecturer in Geography. She has always been a mad keen gardener.
She lives with her amazing husband and dogs in Wisconsin, USA. She's
a lucky woman.
***
I feel lucky to have developed
full blown POTS at the age of 52. Not that it doesn't suck becoming
disabled by something you never heard of before, no matter your age. I am lucky in that my primary
care physician knew me and took me seriously from the beginning.
Like many, I developed POTS after a viral illness. Mind-numbing
fatigue was the symptom that occupied my mind early on. Being over
fifty made him believe me but also never lead him to a diagnosis of a
disorder that usually strikes young women or the later diagnosis of
pre-lupus. I am lucky that I was
diagnosed in six months. I thought I had Chronic Fatigue Syndrome and
read a book that indicated it was an autonomic nervous sytem
dysfunction. I found a local neurologist who specializes in ANS
disorders and booked an appointment. I was in the room with her for
five minutes and she knew what was wrong with me! Some crazy term I
couldn't pronounce. I was thrilled, well as thrilled as you can be in
a hyperadregenic state. I assumed that there would be a magic pill
and I would get my life back! Two years on I am still seeking that
magic pill. Aren't we all? I feel lucky to not have
developed this condition as a teenager, young adult or child. I
realize I have had symptoms all my life but they were subtle. Who
knew my party tricks were really Ehlers-Danlos? I am lucky no one
thought I was suffering anxiety or panic attacks. I carried the over
fifty card where Drs tend to believe you. I can't imagine how
difficult it is on younger people merely trying to maintain
verticality and then be told it's all in their head. I am lucky to have developed
this after having worked since the age of 14. I have a long, strong
work record which allows me to receive a disability check every
month. I feel extremely lucky to have Drs who documented everything
so that I became eligible for disability on the first application. I am lucky to have a good Dr
and fabulous Nurse Practitioner that care and take time with me. I am lucky to have traveled
most places in the world I wanted to see.
I feel lucky that I live the
internet age where research is possible and others with this
condition can bond. I feel lucky this disorder is
teaching me patience, something I have always lacked.
I am lucky I have good
insurance and am comfortable financially.
I am beyond lucky to have an
amazing, supportive husband who retired to take care of me and caring
family and friends. I still can't be vertical for
more than 10 minutes but I am so much better off than so many and I
am extremely lucky for that. With age comes wisdom?
Today's guest post for Dysautonomia Awareness Month 2016, is fellow Australian, Alexandria. Read about her experiences trying find a diagnosis as an overweight patient and living in a rural area and send her some love. Alexandria is definitely not alone in this issue and I hear of many patients who find themselves in the same situation. It really is an issue that needs to be spoken about and addressed. Thank you Alexandria for sharing your story.
My
name is Alexandria. I am 25 and from regional Victoria, Australia. I
was diagnosed with Inappropriate Sinus Tachycardia in April 2016
after suffering debilitating symptoms for the year previous. I cannot
work currently, so I spend my time running a baby name website, which
is a huge interest of mine, and keeps me occupied. I love spending
time with my family and partner, as well as being kept company by my
old dog and kitten. My hopes for the future are to find ways to
spread awareness and hope for invisible illnesses.
***
Finding
a diagnosis for an invisible illness can be a tough journey. We each
face the struggle of finding people to believe what we’re feeling,
investigate those symptoms, and refer us on to specialists. This is
especially hard when you’re not considered a standard patient for
the type of disorder.
Within
the dysautonomia community, it’s very common for people to be of an
average or slightly-below average weight. But for me, I started this
journey overweight. Unfortunately, there’s a lot of bias towards
obese people within the medical field, and I often found that my
problems would be pinned on my weight without any questions or
investigation. Discussions of seeing a blood pressure specialist due
to suspicions of a low blood pressure disorder were completely off
the table, with one doctor even diagnosing me as having high blood
pressure without putting a cuff to my arm.
Of
course, being in a rural town did not help this journey either. In a
city, you have choices. If your doctor isn’t any good, there’s
hundreds more around you – there are even GPs that specialise in
certain areas. However, in a small country town, you are very
limited; once you’ve crossed one doctor off your list, you’ve
eliminated 33% of your medical options.
When
I did finally get a referral to a specialist, I was very nervous that
I was going to hear that it’s my weight again; that my efforts to
lose it aren’t enough, and there’s nothing wrong with me apart
from the fat on my body. I was so relieved when this specialist
finally looked at me, and saw me as a whole person. They listened,
took into account my symptoms, and ran all the tests that were
required. That week, I finally got my answer: I had Inappropriate
Sinus Tachycardia, a form of dysautonomia.
Although
the trips to the city from my country town are long and draining, and
the cost of travel and food is high, I did not regret seeing someone
who would give me a chance, and see that not everyone fits the
standard model of a dysautonomia patient.
I
feel that it’s so important that doctors keep in mind that weight
should not be the sole focus. Excess fat can certainly create a
multitude of health issues, but there are also a multitude of health
issues that exist that aren’t related to weight. By focusing on
weight alone, my past doctors took away years of time that I could
have been in treatment. Having a doctor that could see that made all
the difference in my life, my treatment and even the way I saw
myself. It made me feel like my symptoms were valid, and that I had a
place within the dysautonomia community. I encourage all doctors to view patients as a whole, and take the time to investigate symptoms, so we can find our answers and learn to live our lives. Alexandria.
[Image: a gorgeous wood and brass revolving door at the Savoy hotel. Source]
Tuesday I sat in my neurologist's waiting room. It was full to overflowing as she was running overtime. It's not uncommon. All it takes is one late patient or unexpected emergency for the program to blow out. I can count on less than one hand the number of times in the past nearly eight years I've been seeing her, where she's hurried me out her door. But the cumulative effect of this tendency to take her time, on top of those other factors, also stretches that list out further and further.
Fellow patients came and went. Heading off for a belated lunch or restorative coffee. I commiserated with the petite elderly woman across from me about the delay. We commiserated again when she came back from her impromptu lunch to find me still sitting there. Surprisingly most people were happy to go with the flow. Momentary frustration replaced by resignation. Getting in on time to see any doctor is rare. There's an urban legend that some guy living in Preston once managed to have an on time appointment at some medical clinic somewhere. No one really believes the myth, but we all have a little kernel in hope that maybe, just maybe, it was true, and in turn that it could also happen to us.
When my name is called she talks about how much she loves my new hair and clothes. We've always bonded over a love of fashion. I wheel down to her room, my driving skills hampered by exhaustion and building hypotension.
"How are you going?"
How to sum up the shitfight that has been my life since I last saw her? It's never easy. Physically and cognitively things have gone down hill, though it is the later that concerns me. Where to begin? I start listing the physical issues. Even I know how disorganised my communications are, fatigue having amplified my cognitive fog. Part of it is also my worry. The worry that I've voiced on occasion before hastily stuffing it back down, binding it's limbs, shoving it into a box, welding the box shut, before tying bricks to the outside and tossing it over the side of a ship somewhere over the Mariana Trench (I am nothing if not thorough in my denial).
While my physical issues are problematic, apart from the odd exacerbation, I can deal with them. I've come to accept that they are simply part of life and while they can be difficult to deal with at times, after ten years I'm made my peace with them (I fully reserve the right to bitch and moan about them in the future. I'm not fool enough to believe that acceptance is reached, and all is fine and dandy in the world from that point on. Life doesn't work that way.) But my cognitive issues aren't improving. Things are better than they were the first half of the year but they are still no where near where they should be and the term brainfog underplays what I've been experiencing.
When I start describing the heartache of finding writing and reading difficult she instantly recognises the importance of the issue. Over the years of our relationship we've frequently discussed my writing. She's been excited when I've presented at a festival or had a piece published and always added that I am a blogger or writer to my letters. She understands that not only is this important to me, it is indicative of a significant problem. My language skills have always been my strength. And their deterioration a sign she can't ignore.
Back in June I wrote of my worry that I was forgetting important things. Turns out I was. Emails came in querying where I was and why I hadn't completed certain tasks. The embarrassment combined with a realisation that my fears were founded. I was not just forgetting the little things I was forgetting the big thing. The things that were important to me. I have since sent off many a mea culpa email, apologising, and where appropriate, trying to explain what had been happening. But it is the ones that related to my writing that have hit me hardest. That I could forget things so dear to my heart is worrying. The fear that I still have a collection of important events or issues that have escaped my mind is ever present. It would seem I was going through the motions but nothing was sticking. Even when I have interacted, somewhere between event and storage, the information simply evaporated.
Memory, language, attention, speed of processing,...I list off my concerns. My understanding that one may underpin another, or be working together to create the impairment.
"It may be useful to have a Neurorpsychological assessment."
Ugh.
A kick to the guts.
Not that I haven't thought about having an assessment. I have. On multiple occasions. Especially following my SPECT results, and more so the last six months. But telling a former a Neurospychologist that they may need a neuropsychological assessment is confronting. Mr Grumpy knew about my hesitation. I've discussed my fears with him on more than one occasion. He pipes up to fill in the blanks where my mind dissipates, as I face the realisation that it's not just me who thinks I need to be assessed. That the expert in the room agrees. I start to recite the problematic issues involved in assessing someone who was previously the assessor. The community is small. And I don't want to be assessed by someone I know. I know the process and the assessments used.
"I still know all the tests. I can still recite the memory stories and draw the RAVLT!"
Why that phrase stuck in my head I don't know. Maybe because a small part of me registered the mistake.
It wasn't until I was sitting on my loo 24 hours later, that I realised that you can't draw a RAVLT, a list of words. You can, however, draw a Rey Figure, which is what I had in my head, and I can still draw.
Word substitution. Crap. Just a small example, but when these tests have been your bread and butter and you've conducted them more times than you can count it is confronting. Somewhere between mind and mouth or mind and keyboard, things get lost. Going back the other way is not much easier these days. Attention, divided attention, memory it's all screwy. And the concentration and effort that is required to try and present a good front is frequently exhausting.
***
(The Walking Dead Season 5 spoiler alert two paragraphs ahead.)
There was research that came out around 2011 that suggested that doorways were essentially memory scrubbers. A kind of purging of unnecessary information as we move from place to place. It's thought to be responsible for that common feeling when you walk into a room and then stand there having already forgotten what you were supposed to be doing. I feel that every day. Though I often feel like I am stuck in a revolving doorway rather than simply passing from one room to another.
There's a pivotal scene in The Walking Dead where three characters get stuck in a revolving doorway. One fights his way out through the doorway condemning another, Noah, to be eaten alive by the zombie horde, while the third, Glen, is stuck watching in horror as this occurs on the other side of one of the glass partitions. Noah is my memories being eaten, while I'm Glen, stuck on the other side of the partition, impotent and condemned to watch my memories being ripped apart. (First guy gets his comeuppance later in the season, not sure what my real life equivalent would be. See, that's what cognitive issues give you, an unfinished metaphor, or parable, or....well my brain can sort of feel what it is but I can't quite get there.)
She mentioned a name. A Neuropsychologist she assured me was very competent. It wasn't a name I recognised, not that I can trust my memory at this point. And I acquiesced. In truth if I hadn't blurted out an impulsive "Okay!" right then and there I likely would have left the appointment with no referral sent off. I would come back in six months having progressed no further except for a few more blood tests for more rare disorders. I feel sick but resigned to the fact I will soon be siting across from someone asking me the same questions I asked the patients I saw back when I was working. I wonder if he'll find the trick to making me feel relaxed? I wonder if I'll be able to stop myself from judging him every step of the way? Poor guy. I feel sorry for him already.
I sat there while she dictated her letter. I must have looked deflated as she assured me that she's not giving up. That she knew other doctors did. That other patients are left in limbo with no support and trying to navigate their diagnostic journey alone. She assured me she had patients where it took ten or twenty years to diagnose, but she kept with it. She assured me that every time something new and weird comes up at a conference that she instantly thinks of me, and starts trying to work out if it will fit. She assured me that we know more about autonomic disorders now than five years ago. That this knowledge will only increase with time. She assured me.
***
We left the appointment and headed to see our son. It's one of the bonuses of the six hour round trip to the city. A neurology appointment can hardly be classed as fun. But after the fact when you're hanging out in a dodgy, smelly, laneway taking photos, it's easy to push aside what was discussed an hour or two earlier. You scull down a long black and feel it infuse your being and let the rain fall, softly dampening your clothes and hair.
And you realise that sometimes those doorways are much appreciated.
[Image: A woman with green hair (me) sits in her red electric wheelchair in a graffiti covered laneway. She is wearing a floral dress, green stockings and black high heels with a vibrant red scarf and is looking down.]
Michelle
I've been listening to a lot of Etta James so Next Door to the Blues popped into my head when I started thinking about door themed songs. I saw Vika Bull in At Last the Etta James Story earlier this year. Gosh she was amazing. If you're in Australia and it comes to your area go along. I've been a huge Etta James fan for years and equally have followed Vika (and Linda) Bull since the early 90s and it did not disappoint.
Today's guest post for Dysautonomia Awareness Month 2016, is fellow Australian Blogger, Sarah. Read about her experiences as a rural patient and send her some love. You can find more from Sarah over at her blog Reflections of a Bear.
Hi, I’m
Sarah! Part girl, part bear. I’m 27, with a pacemaker, but still
have to show ID to buy spray paint. I’ve been married to Mr Happy
for nearly seven years *mushy sigh and starry eyes* I love crafty,
creative, DIY stuff like cooking, sewing, painting, writing,
sketching, woodworking and gardening. I love words (I even have a
list of ones that I’m fond of). I play piano. I’m a Christian.
I’m half Lebanese, half Australian (born in Australia). Oh…and I
have dysautonomia (specifically NCS/NMH/VVS) among other illnesses.
I grew up (and still live) in a small country town in Australia. Beef farming is the main industry here: every year a whole week is set aside to celebrate it (with costumes, parades, markets, and lots of cows…and cow poo)! It’s a beautiful place: the scenery is gorgeous, the air is fresh and clean, op shops abound, and the CBD is just four blocks. It’s the perfect place to live…unless you have dysautonomia, because a hub of medical facilities, this town is not. I got sick with dysautonomia when I was 14. None of my local doctors had a clue what was going on with my body. So I spent my teens making more and more 6hr round trips to the city for tests and specialist visits. What was that like? Well, imagine you’ve got the flu. You ache everywhere. You’re shivering. The light hurts your eyes. You’re nauseous. When you move, everything spins. Your heart thumps lamely. Your legs feel like concrete. A trip down the hallway to the toilet exhausts you. Feel like going on a 6hr car trip? No? Tough. When you’re chronically ill, and live in a small town, you don’t have a choice. Even with all those trips for testing and appointments, it still took six years before I was correctly diagnosed (and another year on top of that before we found someone who could start treating me). There’s a particular kind of despair reserved for when you’ve dragged your sick self 6hrs away for answers…but got none.
Living in a country town not only makes it harder to get diagnosed, it also restricts your access to treatments and therapies, sometimes even basic ones. Three weeks after pacemaker surgery, I ended up in my local ER with a tearing chest pain so strong that I could barely breathe. But there was only one doctor on duty, and he was busy performing emergency surgery on someone else. It took six hours for him to see me. *squints and peers through screen* I can see you shaking your head at me, saying, “Well, duh! Move to the city!”
I shake my head back at you, because it’s not that simple. When Mr Happy and I got married, we did discuss moving away. But here, in this small country town, we have wonderful family and Church family. The benefits gained by moving closer to specialists are easily outweighed by the loss of that support network. Plus, even if we wanted to live in the city (which we don’t!), there’s no way Mr Happy and I could afford to live there and pay for all the medications / testing / treatments we need. Living with dysautonomia is hard, no matter where you live. But, in my experience, living in the country seems to add another layer of difficulty. I don’t have any solutions though. We’re happy here, surrounded by green paddocks. We’re part of a Church that really looks after each other. Our family is close by. Mr Happy loves his job. Those things matter too.
[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.
