Having been diagnosed with heart failure approximately six years ago, it does sometimes feel like the diagnosis was more of a sentence to a very strict prison facility. There is no right of appeal, and sometimes you feel so lonely it’s almost as though they put you in the ward for solitary confinement. I suspect other patients with chronic illnesses often feel the same way.
You see, our prison guard is named chronic, a guard that has endured throughout the ages. This is appropriate when you consider that the word “chronic” according to the Oxford Dictionaries means: persisting for a long time or constantly recurring. Your illness may get better for a while, or medications and treatments may help you adjust to the symptoms a little better. But then another symptom enters your prison cell, or a previously reformed symptom is allowed back into the cell. Before you can blink, chronic will triumphantly shut the cell door with a resounding bang.
If you doubt the analogy of the persistent and enduring cruelty of a chronic illness to a patient’s prison guard, let’s explore how the term chronic became linked with time. According to the website English-For-Students.com, The root word is chron which means time. It comes from the Greek word chronos. As this website reminds us, that is also where we get other time-linked words such as chronology or chronicles.
Indeed time is relevant to chronic because you will have the illness for a long time once it finds you, and sometimes when you are besieged by your symptoms it feels like time passes very very slowly, sometimes at almost a glacial pace.
If you are wondering what the basis for the Greek word chron is, like many Greek words, there are connections to Greek Mythology. The website Greekmythology.com says:
The image that the above brings to mind is appropriate. Chronos as time begets chaos – just as chronic illness introduces chaos into the life of the patient. Chaos in terms of disorder, confusion and disruption that can make the patient miserable.
Just like chronic has been with us since the time of the Greeks and their myths, chronic illnesses have besieged humans for many centuries. The John Hopkins University Press website, there is a description of a book entitled Chronic Disease in the Twentieth Century:
I think the 20th century is also notable for a number of organizations that have formed to seek donations for and/or spur the research and development of cures for a number of chronic diseases. Examples would be the American Cancer Society, the American Heart Association, and the Arthritis Foundation, to name just a few.
We should not underestimate the advocacy and impact of these organizations. The American Heart Association website says:
The website provides a list of milestones in a 90-year period which includes things that have directly benefited me such as the development of the pacemaker.
Thanks to these organizations plus the efforts of other countless medical professionals, people like me who have certain chronic illnesses have at least the hope of parole at some point from our chronic captivity. I think parole is a good term because it is a conditional release in that we may still have the condition, but it may be vastly more manageable. (But of course there is also at least the hope at some point for total pardon from heart failure.)
Unfortunately, some of my colleagues in chronic captivity do not have as optimistic an outlook. There are a number of conditions that we are only beginning to learn about what they are. We may not have diagnoses, or causes, or treatments. I have so much compassion for those patients. One example would be chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME/CFS). What is it like to have this disease? Here is an excerpt from the CDC website public health matters. It is taken from a May 2017 blog post entitled “Making strides to enhance the lives of those with living with ME/CFS.”
I do not have CFS or fibromyalgia. But one of my recurring symptoms with heart failure is fatigue. Thankfully, it is not constant like a CFS patient experiences. But I know the frustration of telling people about the wearing fatigue you are experiencing and have them react like – suck it up, everyone experiences fatigue. Trust me everyone does not experience this level of intensity and recurring fatigue. But it is sometimes impossible to argue the case, and when you hit a brick wall you feel even more alone and more in captivity. I can only say to those people who doubt the validity of a disease is to stop thinking that “no one had these diseases when I was growing up so they must be imaginary.” A lot of things have changed since we grew up – environmental factors, viruses and other causes that medical professionals are only beginning to identify and research. Just because you don’t understand where it comes from doesn’t make it fake. I mean, I don’t’ understand quantum physics, but that doesn’t mean it’s a fake science. And in our world I am beginning to see and detest the overuse of the word “fake”.
As for the doctors who would say that it’s all in your head or you are making it up, I don’t even know how to relate to that. In fact, if I had a doctor that said that I hope I wouldn’t even try. I hope I would walk right out of the doctor’s office and find another doctor.
What is needed is continued high profile attention to CFS and other lesser known illnesses. A friend reminded me of a bright note that occurred in September 2017 when according to the NBC news website:
As the silence about these conditions ends, hopefully there will be a light at the end of the cell for those captives of CFS and other chronic illnesses that need to have more funding, research and attention focused on them.
Melanie discovered that she had heart failure in 2013. Since that time, she has been learning how to live with the condition, and how to achieve balance and personal growth.