Our bodies are amazing! The things that they can do without us even thinking about it is what keeps us alive, functional, and able to do things like run a marathon, cook a full roast dinner for the family, or even get out of bed in the morning. Now, can you imagine what your life would be like if your body stopped “doing its thing”? If all the little things that you take for granted or might not even know about yourself suddenly disappear from your body’s capabilities? For me, this has been my reality ever since I was 17 years old - when I developed a condition known as dysautonomia. It’s possible you might be thinking - “what the hell is that, and why does it matter if I know about it??” Well, since October is Dysautonomia Awareness Month, we thought it might be a good idea to give this condition a bit more of a spotlight in the media and let people know what living with it can look like for a person.
Before you know how it affects me, you’ll need a little background on what the condition actually is in the first place. For that we can look at the name: Dys- meaning abnormal or imperfect, and autonomia- referring to the body’s autonomic nervous system, in layman’s terms - a malfunctioning autonomic nervous system. This means that all the things controlled by your autonomic nervous system, like breathing, heart rate, blood pressure, digestion, temperature control, digestion, etc. (all the things your body does without you thinking about it) do not work in the way that they are supposed to - if at all. There are several different types of dysautonomia depending on which body system is affected the most, but I am affected primarily by Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS) and Orthostatic Hypotension (OH) - all of which act the most on the heart and cardiovascular system.
Now I know these are a lot of long, fancy words which probably don’t mean much to you - but I find it helpful to explain what all of this means, being that my body is pretty much allergic to gravity, or like I am in a constant game of ‘the floor is lava’. I can’t stand up for much more than a few minutes without fainting, and I’m pretty much tired all of the time from all the extra stuff my body has to go through to keep me alive while the proper mechanisms for functioning are unavailable.
I know this is probably sounding pretty grim for me, but living with dysautonomia is not actually that scary if you get the right diagnosis and treatment. For me - I have to use a wheelchair instead of walking and standing, and I take a whole cocktail of medications every day. I also have to eat all of my meals in liquid form as my stomach doesn’t like to digest things properly, and drink about 3-4L of water every day to keep my blood volume up.
All of these adjustments mean I am able to live pretty much normally, going out and being a person in the big wide world, however, until I was officially diagnosed my life was very different.
Dysautonomia hit me like a truck when I was in year 11 of high school. One day I was ‘normal’ and the next it was like my whole body was shutting down - I could barely get out of bed in the morning, let alone go to school or do my normal extracurriculars! Everything was absolutely exhausting, and no one could give me any answers as to why! Doctors were completely perplexed as to how a teenager could go from completely healthy to utterly demolished within a matter of days. It took a team of doctors from all different specialties, a month long stay in hospital, one heart surgery, and a diabolical procedure called a Tilt-Table-Test to finally diagnose me with dysautonomia, after around 8 months of misdiagnoses and hypotheses.
Fortunately for me my experience is on the quicker end of diagnosis, as the average time a dysautonomia patient has to wait from first presentation to an official answer is 7 years!
This long wait for answers is a massive issue in the medical community as it means many people cannot access the correct treatment for them to live a normal life; and is mainly due to a lack of awareness about the condition as a whole.
Dysautonomia is often branded “the most common condition you’ve never heard of” as around 1 in 100 teenagers will be diagnosed with POTS, and roughly 70 million people are affected with other forms of dysautonomia worldwide. It is a more commonly occurring condition than multiple sclerosis! These issues aren’t just present in diagnosis though, as 73% of POTS patients have encountered a doctor who hasn’t heard of POTS - meaning their needs will not be met correctly in treatment (a situation that happened to me when the doctor in the emergency department didn’t understand why I couldn’t walk around the room for him to check my balance).
Dysautonomia awareness for me also means redefining what the idea of a ‘disability’ looks like. To many people I appear very normal; some days I need a wheelchair but others I can manage very short distances on my own (i.e. from a car to a restaurant). But even while I am up and walking, I am still disabled. I still need to use a disability parking spot and the convenient seats at the front of the bus, I still have quite poor balance and the energy and stamina of a 90 year old. People often comment on how I “don’t look sick,” or that I’m “too young to be sick,” and give me weird stares when I shuffle my legs around in my wheelchair. I would hope that with more awareness about disabilities such as dysautonomia, the general public becomes more familiar with the many ways a disability can present itself - and that just because someone uses a wheelchair it does not always mean they are paralysed! Yes, I can still feel when you hit me on the legs to prove I am ‘faking’! No, I am not looking for attention by using a wheelchair, and most importantly: No, yoga and green smoothies will not cure me! If you ever find yourself confused or in doubt about a stranger's situation, I would always recommend going by a policy of kindness and understanding - as it is impossible to know someone’s life just by the way that they look.
Yours Truly,
Macy Torrington
All Statistics provided by Dysautonomia International