Once upon a time, meeting this way was considered scandalous, even dangerous! But, just as the early days of internet dating required certain intrepid desperation; my own desperation sent me online in search of people like me. It is so easy to feel isolated when you have an odd illness. And when the illness carries on for years that loneliness looks for others. Here is how I found the rare birds in New Zealand who are like me…
When I was first diagnosed, Dysautonomia is not the name I was given for what was wrong with me. Back then, I was mostly having problems with dizziness and fainting, things were to progress but I didn’t know that then. Investigations showed that my heart was stopping, so they put in a pacemaker. I was told there were very few people with my particular problem in New Zealand. When I asked if I could get in contact with the ‘very few’ I was told that privacy laws prevented me from having their contact details. Which is perfectly logical, but not helpful. It sounded like a job for the internet.
Let me explain a little first, about my odd condition. Dysautonomia is an umbrella term used to describe several different medical conditions which all feature autonomic nervous system dysfunction. The autonomic nervous system controls the ‘automatic’ functions of the body that we don’t think about. Pupil constriction, tears, saliva, heart rate, blood pressure, digestion, bladder and bowel function, temperature regulation and the body’s ability to compensate for changes in posture. Patients often feel dizzy and nauseous. They may not sweat properly, be able to pee and poop normally. Headaches can be a feature. Fast and slow heart rates, labile blood pressure. They can experience brain fog and horrible pain related to various dysfunctional aspects of their autonomic function. All the while looking perfectly normal.
Our bodies themselves are usually structurally fine; it is the dysfunctional nerve conduction that creates our problems. Our bloodwork and other tests can be fine. Yet we are not. Dysautonomia is often referred to as an ‘Invisible’ illness because it is hard to see the debilitating effects by looking at a person’s appearance. Spend some time in the company of someone with Dysautonomia and you will see that it isn’t really invisible at all. Our quality of life has been compared in the literature to patients with congestive heart failure. Functional disability is often a feature of patient’s experience. In short, Dysautonomia is really hard to diagnose and really hard to live with. We all wish that more people understood that. We run marathons every day, just doing simple daily tasks. And before we even got to this stage, we ran the marathon of searching for answers to our medical oddities.
Patients with Dysautonomia typically wait years for diagnosis, often suffering wrong diagnoses and medications along the way.
In my early search to understand more about my condition, treatment options and prognosis, I looked for medical information and support groups online. Even my doctors couldn’t help me with more information. I was desperate to know more, to connect with others like me. People choose whether they want to be online, so my chances of meeting others like me who would want to meet in person was much better. To start with, the groups were all American. Then, occasionally a new Australian member would appear. I posted messages, I scoured the boards, but New Zealanders were nowhere to be found. Years passed and I gave up looking online for people like me. It was too disheartening.
Then, a neurologist explained that I had Pandysautonomia. It is a rarer, widespread, progressive form of Dysautonomia, the cause is still unknown. There is no cure without a cause so the symptoms are treated as they occur. The medication and treatment regime can be almost as debilitating as the condition itself. Armed with a new name for what was wrong with me, I hit the internet again. The neurologist said he knew of one other patient like me, in Wellington. I was determined to find her.
How much the internet had sprouted in the time I had been absent! There was a new, large not-for-profit organisation in the States, raising awareness, funding research and hosting conferences for people with Autonomic Dysfunction. They pointed me in the direction of a popular Australian Dysautonomia blogger. She pointed me in the direction of and Australian/New Zealand support group. And there, at last, I found my ‘birds of a feather’.
There were already Aucklanders there! And the girl I had heard about from Wellington! I was beyond surprised! I cried. As nice as it is to wave across the digital divide to one another, it’s all kinds of wonderful to meet up. I’ll never forget our first time. The relief of being around people who really got it! I talked so fast I could barely get a breath in. We laughed. We shared stories of doctors, discussed the differences in our treatment plans. We call ourselves ‘The Horizontalists’, because our meetings are usually in a park, lying on blankets and pillows. We commiserated with each other and our eye contact spoke volumes of unsaid words, unshed tears. We continue to meet, our group has swollen in recent months as new patients are diagnosed and find us online.
Our kiwi group is 16 strong. Kathleen, Janette, Renee, Zen, Kirsty, Carolyn, Andrea, Sarah, Hailee, Rosie, Felicia, Hayley, Sarah, Rebecca, Rachel and little Emi (see a pattern there? 80% of people diagnosed with Dysautonomia are female). If there are more of you out there, shout out! We’d love to find you.
Every person in that group is a crucial part of their family and friendship groups; each of them languishing with a diagnosis that lacks adequate research or effective treatment. Awareness is slowly increasing in the medical community, so diagnosis is more common now. The thing is, the many forms of Dysautonomia is not as rare as you would think (more than 11 million people worldwide), but they are rarely diagnosed in New Zealand. Some of the forms of Dysautonomia are Postural Orthostatic Tachycardia Syndrome, Multiple System Atrophy, Pure Autonomic Failure, Autoimmune Autonomic Ganglionopathy, Pandysautonomia & Familial Dysautonomia.
Finding others like me has brought me a community and comfort that is unparalleled. But there is still so much to do. October is International Dysautonomia Awareness Month. It’s a tough gig pushing awareness when our numbers are so few. We are generally too sick to do all the usual methods for getting the word out there. But we are driven. We know that out there are more people like us, and people with autonomic problems which have yet to be diagnosed. People struggling through each day, invisible in their communities, simply because no one knows about what they are going through. We really want to change that. Our community of patients might be small, but so is New Zealand. We know our wider community will open their minds and hearts to people with invisible illness, as soon as they know we exist.
Dysautonomia = Dys (dysfunction) Autonomia (of the autonomic nervous system).
Dysautonomiacs = Regular people afflicted with this debilitating, sometimes invisible, chronic dysfunction of the autonomic nervous system.
Good sorts to meet on the internet. 🙂