Imprisoned by a chronic disease and wondering if the sentence will ever end?

​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.
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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:

• Chronos is the personification of time in Greek mythology. He was considered to have the shape of a three-headed serpent. The heads were those of a man, a bull and a lion. Along with his daughter Ananke,  the goddess of inevitability who was also in the form of a snake, he revolved around the primordial world egg, until they split it apart to form the earth, the sea and the sky. According to the Orphic cult, Chronos gave birth to Aether and Chaos, and created a silver egg in Aether.   Out of the egg (came) the gods Phanes and Hydrus, who later gave birth to the first gods and the universe. Sometimes, Chronos  was confused with the Titan god Cronus by mistake, or conflated with him on purpose.

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:

• Long and recurring illnesses have burdened sick people and their doctors since ancient times, but until recently the concept of "chronic disease" had limited significance.    *** Historian of medicine George Weisz analyzes why the idea of chronic disease assumed critical importance in the twentieth century and how it acquired new meaning as one of the most serious problems facing national healthcare systems.

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:

• Before the American Heart Association existed, people with heart disease were thought to be doomed to complete bed rest — or destined to imminent death. But a handful of pioneering physicians and social workers believed it didn’t have to be that way. They conducted studies to learn more about heart disease, America’s No. 1 killer. Then, on June 10, 1924, they met in Chicago to form the American Heart Association — believing that scientific research could lead the way to better treatment, prevention and ultimately a cure. The early American Heart Association enlisted help from hundreds, then thousands, of physicians and scientists.  *** Since then, the AHA has grown rapidly in size and influence — nationally and internationally — into an organization of more than 33 million volunteers and supporters dedicated to improving heart health and reducing deaths from cardiovascular diseases and stroke.

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.”

• How would you feel if you were living your life and you suddenly came down with what seemed to be the flu?  What if this flu-like illness seemed to go on forever, and you never returned to your normal self? What if your ability to participate in your regular physical or mental activities caused you extreme fatigue and it took you longer than normal to recover?
• What if these occurrences persisted for months or years? What if you were unable to take care of your family, couldn’t go to work, woke up feeling like you hadn’t slept at all, and you were confined to your bed for months? Could you imagine what your life would be like? What about if this happened to your child?

Then imagine that you went to your doctor, and they told you there’s no treatment and no cure for your symptoms? What if your doctor told you that you were making up your symptoms or that what you were experiencing was all in your head? Sadly, this is reality for many people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).  Another similar disorder we don't know nearly enough about is chronic fibromyalgia which also is known for its wearing fatigue.

​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:
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• Lady Gaga's announcement on Twitter that she suffers from fibromyalgia was met with an abundance of well wishes, but more moving were the empathetic responses from others coping with the condition. Not only did fans feel for the "Born This Way" star, they could relate — many gushed with gratitude that Lady Gaga stepped up to raise awareness for a disease that is all too often misunderstood, misdiagnosed or just missed altogether.

​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.