I’ve spoken about the dangers of falling into assumptions before. But what if your
assumption literally rested on the knife’s edge of life or death?
I’m going to assume for the majority of you don’t know what autonomic dysreflexia is. If you do, fantastic: feel free to share this article with friends and family, and encourage them to help spread the message. Autonomic dysreflexia may not mean much to you now, but for me it could literally be the difference between life or death.
Autonomic dysreflexia (AD) is a condition in which the involuntary nervous system overreacts to external or bodily stimuli, which can lead to a sudden onset of excessively high blood pressure. It specifically affects people with spinal cord injuries; more commonly those T6 level of higher, but in some rare cases can also affect those with T7 and T8 injuries.
AD is a serious condition that’s considered a medical emergency. It can be life-threatening and result in either stroke, retinal haemmorhage, cardiac arrest or pulmonary edema.
Thankfully, for most people is can be easily treated as well as prevented. The key is knowing your baseline blood pressure, triggers and symptoms.
Unfortunately – and herein lies the purpose of today’s topic – many health professionals are not familiar with this condition and therefore it is often up to those people living with a spinal injury and their families to be informed and advocate.
I owe my life to my wife, in more ways than one. But on this instance, it’s happened to me where I’ve presented to hospital with high blood pressure (a symptom of dysreflexia) and the doctors have tried to prescribe me medication that will bring my blood pressure down.
What they didn’t realise is that the medication wouldn’t work – my blood pressure would continue to rise until they found the source of the issue (which could be anything from a urinary tract infection to an ingrown toenail!). It took my wife, pulling out her nurse registration and telling them she was a spinal cord specialist nurse, to get them to actually listen.
Now this isn’t a dig at the doctors and nurses. If 2020 has taught us anything is that we can appreciate the incredible work they do in our communities! My wife was a nurse for 18 years so I can fully appreciate how hard working they are.
However, what it does highlight is both my biggest fear and biggest issue of living with a disability.
Firstly, my fear is that I will present to hospital either unconscious or in some other incapacitated state and no one will be there to advocate for me. No one will know what autonomic dysreflexia is and how critical it is for my survival.
Secondly, it highlights society’s ignorance of people living with a disability. People often assume they understand what life must be like living with a disability. They’ve heard the stories, they may even know one or two people who are living a disability themselves. But what they don’t realise is that we aren’t one- size-fits all.
Often people assume that my life and experience is the same as another person’s living with a spinal cord disability. That people living on the autism spectrum are the same. People who are deaf, blind, dyslexic – we’re all the same. I can tell you that couldn’t be more categorically wrong.
It’s also another example of how many able bodied people will often assume that we can’t think, speak or act for ourselves.
On far too many occasions – I’ve honestly lost count! – I will be looked past for the companion I’m with or (and I kid you not) the stranger nearby. It could be paying the bill at a restaurant, picking my kid up from school, or even presenting to the emergency department at hospital. No one looks at you – the person in the wheelchair – as the authoritative figure.
It’s frustrating, demeaning and just plain rude.
The moral of the story: Check your assumptions. You’ve heard me say it before and no doubt it will continue to be a common theme in my blogs. It’s because I’m so passionate about changing the culture of our systems, creating a more honest and inclusive society.
So don’t pretend you know everything about walking in my shoes (pardon the pun). Take a second and give someone the common courtesy of listening to them.
You never know, it could save a life...
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