Has anyone who hasn't got Dysautonomia or a family member living the joy, actually heard of it? The answer is pretty much a big fat NO!, Nyet! Oya! Nda! Ne! Nono!Nede! Na!
There are so many illnesses that receive no publicity. That aren't "sexy" or have a great PR/celebrity machine behind them. Unfortunately Dysautonomia falls into this wallflower group. We often don't look sick. We don't have scars and bandages. Many don't have walkers or wheelchairs. We don't have the external, "legitimate" signs of illness. But you don't look sick! Ha! How many times have I heard that one? We are the supermodels of the illness world! So it's up to us to spread the word. Feel the power of the Pasty Faced Army!!
Dysautonomia. Say it 10 times fast. Remember it. Tell your friends. It's real. It doesn't discriminate. It could affect you or someone you love at any time.
There are many forms of Dysautonomia, some rare and some way too common. It can affect children and adults and everyone in between. One form, Postural Orthostatic Tachycardia Syndrome, POTS, is thought to affect 1 in 100 teenagers, so where are the TV ads, the telethons, the glittering star-studded charity balls??
Even many doctors are unaware of Dysautonomia. It is notoriously difficult to diagnose as the symptoms can be vague or unusual. It can take many years until you get the answer. Many are told "it is all in your head", it's stress or anxiety, before finally finding a doctor who can put together all the pieces of the puzzle.
It's not that those of us lucky enough to have Dysautonomia want your pity, hell that's the last thing we want. What we do want is a little bit of understanding. Just a simple realisation that Dysautonomia exists and it makes life damn hard. A couple of extra research dollars wouldn't go astray either, but it all starts by taking the veil off this disorder and letting people know that its real and can be devastating.
So what is Dysautonomia?
Do you need to concentrate on making your heart beat or your lungs breathe? " Ok heart, now beat, stop, beat, stop, ok little faster now, not that fast, slow down, that's right, beat, beat, beat......". The simple answer is no. It would be impossible to consciously do this every second of every day for all of the processes in our body. Instead our bodies have a network that takes care of this, called the Autonomic Nervous System. It's the autopilot of our body, taking care of all our bodily systems so we can sit back and enjoy our flight. This system makes the minute to minute, second to second changes our body needs to keep functioning. It controls everything from our heart rate, breathing, blood pressure, body temperature, digestion, and so much more, even the way our pupils react to light.
When this system fails or malfunctions, you develop Dysautonomia.
If you look at the list of bodily functions it controls it gives you an idea of the wide range of things that can go wrong. Yet despite all of this we look pretty good, maybe a bit pasty or tired, but that's it. Unless we do our dramatic fainting (I love how doctors refer to it as a "simple faint", it's so obvious that they have never experienced it), no one sees the absolute shammozel that is our innards.
So here's a basic list of the delightful symptoms of Dysautonomia: Tachycardia (fast heart rate), Bradycardia (slow heart rate), Orthostatic Hypotension (low blood pressure when upright), Orthostatic Intolerance (inability to remain upright), Syncope or Near Syncope (fainting), Severe Dizziness, Exercise Intolerance, Exercise Fatigue, Migraines, Nausea, Gastrointestinal Issues, Nausea, Insomnia, Shortness of Breath, Heat Intolerance, Trembling Limbs, Brain Fog, Frequent trips to the loo, Visual issues, Seizures.
I can understand why some people (even doctors) might not think I'm sick. Dysautonomia is obviously a cake walk!.
How to explain what it feels like to live with Dysautonomia? It's hard, words really don't do it justice. Ever seen that episode of The Simpsons where they go to New York and Homer has the lock put on his front wheel. He stubbornly tries to drive the car just like normal but every rotation of the wheel takes out another ear splitting chunk out of his car. This is life with Dysautonomia. You try to keep going despite the obstacles your body puts in the way but each step takes a chunk out of you. (Whoa I just realised The Simpsons can be used to explain just about anything in life).
Dysautonomia is damn unpredictable too. One day you can do something, the next day you can't. One day it's your heart rate that's messing up, the next it's your inability to get cool, or shaking and passing out, or a combination of all or one or two or.........
Have you ever passed out? Remember the feelings just before? You get dizzy, feel like throwing up, shakey, greying of vision, wind in your ears, slurring your words... etc. Now imagine feeling like that all day, every day, week after week, month after month, year after year. That is Dysautonomia. Some days it's a little better, some days it's much, much, worse.
There is no cure for Dysautonomia. Doctors don't even know the underlying cause in the majority of cases. There are drugs but these don't work for everyone and the side effects can seem worse than the disorder. There are lifestyle and dietary changes which again don't work for some of us. It's about managing our ever changing symptoms each day and hoping it'll get better some time in the future.
Dysautonomia isn't an invisible illness for those of us who live it. Dysautonomia takes away your independence, it changes your life, it changes you. To go from a fully functioning member of society to someone who can't get out of bed some days is confronting. It's even harder when others don't understand. I would love to go to the movies, spend a day clothes shopping, or go out to restaurant. Hell I'd even love to be able to grocery shop without worrying about whether I'll be able to drive home or go arse up at the checkout. But I can't. Sometimes I can try, but I may have to cancel at the last minute, need to leave after 5mins, or spend the whole time in the loo throwing up. Occasionally I can do these things but no one sees the reality that afterwards I can't string a sentence together, stand or walk in a straight line or may need to sleep for a week.
Dysautonomia may be hard for you to see but for those of us with it, Dysautonomia is a big flashing neon sign, Vegas style, complete with feather clad dancing girls and Elvis impersonators.
All we ask is that you acknowledge that Dysautonomia exists, that you go out of your way to find out a bit more, that you tell a friend about it, or wear a blue ribbon to show your support.
Illness isn't always visible people but it doesn't make it any less real.
Thanks for reading.
Greg Page, formally The Yellow Wiggle, has a form of Dysautonomia, Orthostatic Intolerance, and has given his support for a research fund at The Baker Institute here in Melbourne, Australia.
Greg Page fund for Orthostatic Intolerance
For more information check out:
DINET (US site)
Vanderbilt Autonomic Dysfunction Centre (US Site)
Syncope Trust And Reflex Anoxic Seizures (STARS: UK site)
Dysautonomia International (US site)
Dysautonomia SOS (US Site)
And soon coming to Australia and New Zealand our own website. This site is currently under construction, will let you know when it comes fully on line.