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.
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.
[Image: Background is my green velvet bird and flower pillow. Text reads: Seeking Guest Posts Dysautonomia Awareness Month Theme: DIVERSITY find details at livingwithbob.com]
Each year I try to have a different theme for Dysautonomia Awareness Month (October). I've had general open submission, a focus on Australian and New Zealand stories, and even an Arts program where patients expressed their life with Dysautonomia through everything from drawing to poetry and music ('twas rather awesome). Each of the guest posts in these themes have been brilliant and reflect an amazing and diverse group of people in our community. It's been and honour to be able to share so many voices.
This year the focus is to be DIVERSITY. I want to focus on groups within the Dysautonomia community who are under-represented and have difficulties accessing medical care or diagnosis due to being part of these groups. The impetus for this theme comes from the many emails and messages I receive with an ongoing theme of people feeling isolated from much of the Dysautonomia dialogue and media, which can occur for a whole host of reasons.
Information regarding Dysautonomia tends to focus primarily on POTS, younger patients, Caucasian patients, and women. It's the nature of many illness and disability groups that certain subgroups receive more attention (eg within dialogue around breast cancer there is little talk of men who, although a significantly smaller percentage, can also develop breast cancer and such a diagnosis comes with a whole host of issues specific to men), not through ill intent it just seems to happen, and Dysautonomia is no different. Intersectionality in all these communities is an area that needs far more work and exposure (#disabilitysowhite is an illuminating hashtag to follow on Twitter and I highly recommend checking it out). We know ethnicity, age, education, socioeconomic status, and geography, amongst many other factors can affect not only access to appropriate Dysautonomia diagnosis and treatment, but healthcare in general. Even simply having access to the Internet can make or break access to health care. Whilst I can bang on about these issues, it is only those with lived experience of these factors who can truly express their experience and needs with all the nuances that come from belonging to certain groups.
So I want to break out of the dominant pattern and offer up space on the blog for other less represented groups to share their stories. In reality Dysautonomia presents in many ways and doesn't discriminate based on sex, identity, geography, ethnicity etc. An appreciation and inclusion of diverse voices can only make our community stronger.
Bring on the DIVERSE voices!
SO
If you fit into one (or more) of the groups below (or if there's one I've missed and you want to suggest) drop me a line.
Diagnoses under the Dysautonomia umbrella other than POTS (POTS will be heavily covered by all the Dysautonomia organisations during the month) I'm looking for submission from people with other forms eg, NCS/NMH/VVS, OI, AAG, OI, OH, AAG, PAF, MSA,, FD, or a more general Dysautonomia that doesn't fit a type.*
Men
People of Colour
Culturally and Linguistically Diverse Groups
Rural or remote
Over 40 years of age
LGBTQIA
Disabled
Countries where there is little to no awareness (I'd love to share
stories from areas such as South and Central America, Europe, Asia,
and Africa, I do get email queries from patients in these areas desperate for information, so
I'd love to share more of their voices).
*Having said that, if you are living in a remote location, live in a country with little awareness, or identify as LGBTQIA or fit into one of the other groups and have POTS, please feel free to apply as it is often these other aspects of life that can add another level of challenge in seeking care or living with chronic illness and disability.
How to Submit your story:
I'm looking for pieces focusing on how being part of one of the groups above has impacted positively or negatively on your diagnosis or access to treatment or simply living with chronic illness and disability? Do you have any solutions or ideas how to improve the situation? Or even how belonging to one of the above groups makes your Dysautonomia experience unique.
Submissions must include:
Short bio max 100 words.
Understanding that culturally, or for reasons of safety and privacy some posters may not wish to disclose their name, posters can be anonymous.
Max 500 words.
12 Times New Roman
Please attach any photos or pictures using JPEG (Posts with photos tend to attract more traffic).
Depending on the number of submissions some pieces may not make it onto the blog. But I will attempt to get all submissions up during the month and some may be used in guest posts in the future.
I do reserve the right to edit to fit (but will let you know prior to publication), and wont accept any works that include hate speech. My blog is a place of inclusion regardless of sexuality, identity, ethnicity, religion, or lack there of etc. All who come with an open and welcoming heart are welcome.
The final piece for Exploring Dysautonomia Through the Arts comes from Julia. I loved this song from the first time I heard it and thought it was an appropriate way to end the month. Living with any chronic illness is filled with challenges and Dysautonomia is no different. But as hard as it is at times we all keep putting the next foot down on the path. We fight big and small battles each day, but we are all still standing. This month has really shown the creative spirit that exists in the community and I've found both inspiration and kindred spirits. Huge thank you to everyone who has submitted, read, commented or shared.
Julia contributed to last years Dysautonomia Awareness Month that focused on Australian and New Zealand stories. You can find her story here.
This is a song that I wrote (with the help of a friend whi is a music therapist). I was having a really rough time last year and couldn't sleep because of everything that was going on so I thought I'd put my words to music. It it the first song I have ever written.
I'm Up For the Fight
I'm always behind
Always having to catch up,
Catch Up
If I could just get through
With no hiccups,
Catch up....Catch up
If it’s not one thing
It’s another
But I'm always up for the fight
If it’s not one thing
It’s another
But I'm always up for the fight
If it’s not one thing
It’s another
But I'm always up for the fight
I'm done with one thing here comes another
But I'm always up for the fight
Every time I try to just, just be
Just be
It’s like my body is punishing me,
Punishing me
Stop, punishing me
[CHORUS]
At night when my brain is spinning
Reality can hit hard
My days are filled with denial
Reality can be hard,
Can be Hard
Reality can be hard
[CHORUS]
I'm up for the fight ----------- (x4)
[CHORUS]
For more information on Dysautonomia be sure to check out:
Next up on Exploring Dysautonomia Through the Arts is, Gracey. Her work perfectly captures the experience of Dysautonomia. The people walking by while we are horizontal, two different worlds coexisting, yet often feeling so far apart.
I used to take being upright for granted. I could walk and run and
play and sit and stand. I loved to shop, and I used to spend a lot of
time shopping! I loved to play football and badminton. I liked riding my
bike and going for walks through the countryside.
Now I find
all those things very difficult. I have Postural Orthostatic Tachycardia
Syndrome which is a type of dysautonomia. Everything upright is very
difficult for me. Standing can make me dizzy and breathless, make me
feel nauseous and in pain. Even sitting can make me feel awful.
Sometimes I have good days when I manage to push through and do some of the things I have always enjoyed doing. And on the bad days all I can do is lie in a heap and watch the world rush past me. But I don't give up hope because every day gets us one day closer to the day when we find a cure!
For more information on Dysautonomia be sure to check out:
Next up on Exploring Dysautonomia through the Arts is Soraya. Soraya's poem, Comfort, explores the conflicts that many of us face when dealing with illness. Truth and comfort. Our need for both changes each day as we and our worlds change. Balancing both can be extremely difficult.
Soraya Ramhormoz is a writer, patient advocate, social justice and science literacy activist. She writes about her experiences as a patient and as a human being moving through the world with a mysterious debilitating illness. She hopes her excruciatingly honest descriptions of her experiences will raise awareness, empathy, and compassion that will translate into advocacy for people with chronic and terminal illnesses.
In this poem, I tried to deal with the conflicting emotions brought out by the experience of having a chronic illness like Dysautonomia. We need both comfort and truth when dealing with a life-changing experience like Dysautonomia, but what happens when comfort and truth are in conflict? Which do we choose? For me, the answer can shift from moment to moment. I pride myself in my ability to deal with harsh truths, and I value honesty from medical practitioners and my family and friends alike. But having the comfort of denial stripped from me has been a painful, emptying experience.
I wanted to try to capture the emotional shifts we all have in dealing with chronic illness. And I want people to know that it's ok to be both angry when people we trust lie to us in the name of comforting us -and to wish they would lie to us to comfort us once again. We can be angry at the lie, and angry at the loss of the lie at the same time.
Comfort
"It'll
be all right." In
the beginning, that's what they say. You
let the words settle into you, comfort you, like
you're supposed to. Of
course, it'll be all right.
You
learn it's a lie in slow,
sudden
bursts
You're
angry that they lie to you.
You
wish they'd stop They
say that to everyone It
doesn't mean anything anymore —to
you
Then
they stop saying that —to
you They
say that to everyone —else It
doesn't mean anything anymore —to
them
You're
glad —at
first— that
they aren't lying to
you —anymore—
But
what do you put there, where the
lie used to go?
What
do you use to
fill the hole —besides
the longing for
the lie?
For more information on Dysautonomia be sure to check out:
