A recent story of how a teenage cancer patient’s online research of symptoms was dismissed by doctors before death raises the question of where patients go to get information when the system fails to deliver.
Modern medical treatments, especially for LTC’s (Long Term Conditions), can lead to a devastating, often unrecognised, or untreated symptom burden for many, yet sharing the true nature of our online symptom search preferences with our clinician, can lead to criticism and stigmatisation.
What is worse is that we are not generally forewarned of this treatment burden at diagnosis and even after diagnosis, help in this regard can be scant and fall way short of what is needed.
In a recent unpublished study I was involved in, 82% of 163 dialysis patients thought symptom management and QOL (Quality of Life) issues were a priority for them, yet only 41% of patients received any help with their symptoms and only 20% with their QOL.
The result? Many of us struggle with symptoms that daily seek to destroy our QOL. So as a patient, if we want easy access to facts, figures, fellow patients’ expertise and solutions, where do we go? Well naturally, online.
But this is just the start. Eventually the pain, hurt, and heartache drive you to adopt a “whatever it takes” philosophy towards improving our symptoms and QOL and if we are determined to find a solution, we are forced to open our mind more and more.
What in practice does this mean? What follows is rather a far out example, but it helps you understand just how far apart many patients are from the textbook clinical advice on diet, drugs, and treatment “compliance.”
I have had episodes of gout (linked to kidney failure) for over 30 years and have been repeatedly told that there is no medical help for these flair ups. Once, whilst staying in Beijing the pain was so bad I literally had to crawl out of my hotel to the nearest medical outlet. Sadly, it didn’t help!
But I never stopped looking. Then a month ago I finally found a technique that got rid of the pain instantly and there was no more pain at all, even when I slept at night. What was the solution? Well, it was a little unorthodox, but it worked like a treat: I taped a Labradorite crystal to my big toe!
The really important point is this: what I choose to do to resolve hurt and suffering that the system can’t help me with is my business—and I have a right to go as far as I want in search of healing: even if it takes 30 years and a piece of Labradorite!
Now let’s to be clear, there is no doubt that the care I have received has been extraordinarily successful at keeping me alive—even when everyone thought I would die. However, I was the one who reclaimed an excellent day to day QOL—and over the years, I have learned so much about reclaiming mental, physical, emotional and spiritual health in the face of adversity.
But the one thing I have learned above all is that overcoming a harsh LTC like kidney failure depends just as much on how you open your mind as on whether you listen or dialogue with your clinicians.
At the end of the day, when the system fails us, it is our choice where and how we get the information and tips that help us heal ourselves. And it is nobody’s business but our own.
Jonathon Hope was diagnosed with kidney failure at age 16 years and experienced a wide range of treatments, including peritoneal dialysis, haemodialysis, and renal transplantation. His fourth renal transplant in 2005 has been successful. Currently, he is co developing a new self care and self involvement organisation for people with long term conditions, including kidney disease, chronic heart disease, HIV-AIDS, and diabetes.
Competing interests: Please see this page for a full competing interests declaration.