Up until about four years ago, I am not sure the term chronic illness was ever used in my vocabulary. In fact, I didn't even though know that heart failure existed as an illness until the cardiologist made that diagnosis in 2013.
You can’t really blame me for that because it is heart failure is a term that most medical websites hem and haw about when they define it . For example, the American Heart Association says: “The term “heart failure” makes it sound like the heart is no longer working at all and there’s nothing that can be done. Actually, heart failure means that the heart isn’t pumping as well as it should be.”
Clearly heart failure was an ineptly defined term that was new to my vocabulary. In sessions with my therapist, we discussed a lot of the anxiety I had over being diagnosed with heart failure. I often discussed the frustration of the wearing fatigue I felt, along with the side effects from the medications, the restrictions, and the feeling that I was continually caught in a vicious circle when it came to feeling better. She said, "Well you do have a chronic illness." Hearing those words was like a slap in the face because it brought me to the unfortunate reality that I had to face. I had never really used the term chronic illness before, but the word chronic had to mean that it was an illness that was going to be with me for the long haul. Right?
That gut reaction is supported by medical websites. No hemming and hawing about this term, as it means exactly what it says. For example, the University of Michigan’s Center for Managing Chronic Disease provides the following definition: :Chronic diseases are long-lasting conditions that usually can be controlled but not cured."
Here is another definition from the Cleveland Clinic that captures the real live consequences of a chronic illness: "When you are ill with an acute illness such as bronchitis or the flu, you recognize that you will feel better and back to normal within a short period of time. A chronic illness, on the other hand, is different. A chronic illness may never go away and can disrupt your life and your family’s life in a number of ways."
How widespread is the coverage of chronic illness? The Center for Disease Control website has a page devoted to the National Center for Chronic Disease Prevention and Health Promotion. In an article on Chronic Diseases it says: "Six in ten adults in the U.S. have a chronic disease and four in ten adults have two or more.” Okay, when more than half your adult population has more than two chronic diseases, that would seem to be a serious issue. Why aren't we hearing or reading more about it?
If that statistic has not yet caught your attention, well here is an even more sobering statistic about the impact of chronic disease as we age from the website of the National Institute on Aging, part of the National Institutes of Health. An article called “Supporting Older Patients With Chronic Conditions” contains these very real but frightening facts:
People of all ages with chronic conditions may have different needs, but they also share common challenges with older adults, such as paying for care or navigating the complexities of the healthcare system. If your attention only will be perked by economic consequences, well here are some more factoids from the CDC’s website: “Chronic diseases such as heart disease, cancer, and diabetes are the leading causes of death and disability in the United States. They are also leading drivers of the nation’s $3.3 trillion in annual health care costs.”
So what is being done to get U.S. arms around the devastating physical, mental and economic impacts of chronic illness? The Centers for Disease Control website also has a page entitled “How you can prevent chronic diseases”. The CDC reminds us that many diseases are caused by key risk behaviors. It provides healthy choices to reduce the likelihood of chronic diseases. The choices relate to things like: eat healthy, get regular physical activity, avoid drinking too much alcohol, get screened, get enough sleep, know your family history, make healthy choices at school, at work and in the community. While this is a helpful website, I fear like most government endeavors, I suspect it is subject to uncertainty in continued funding (otherwise known as the appropriations process/government shutdowns) as well as uncertainty about dedicated and up-to-date infrastructure to support it.
I also found that there is an organization called National Association of Chronic Disease Directors (NACDD). Their motto is “Promoting Health. Preventing Disease.” The organization’s membership includes “58 State and Territorial Health Department Chronic Disease Directors and their staff who protect the health of the public through primary and secondary prevention efforts and work “upstream” on root causes of chronic conditions. In addition, NACDD unites 7,000 chronic disease professionals across the United States working in state, tribal, and territorial health departments, nonprofits, academia, and the private industry to promote health and to reduce the burden of chronic disease.”
While the efforts of the CDC and NACDD to promote good health habits and find root causes are a key to helping us manage and maybe eventually prevent chronic diseases, I, as well as a number of my chronic disease colleagues, had really good health habits overall prior to the unexpected and devastating diagnosis of heart failure. So what is it that caused us to fall into the abyss of a chronic illness?
I suspect each of us had stress issues because the pace of this world makes it impossible to avoid stress, and perhaps our sleep habits could have been better. While stress and lack of sleep may have exacerbated our conditions once they had taken hold, I find it hard to believe they caused our conditions. So what were our causes, and is anything being done to identify those and help us prevent chronic disease? I don't think my condition was caused by genetics as no one in my family seems to have heart issues. But I am participating in a genetic trial just in case we find that there is an aberrant gene - so that my siblings and nephews can get tested. Maybe some of our conditions were caused by viruses. How does one protect from, or recover from, a random hit like a virus?
My chronic illness colleagues and I are apparently not alone in our quest for answers both to how to manage our conditions and how we got to this unfortunate place. I will admit that I did not watch the first round of Democratic Presidential Debates. First, my general rule is not to watch television after 8:30 p.m. because I want to get a good nights sleep. So I try to have the electronics off at least 90 minutes ahead of time to help create an atmosphere conducive to just dropping off to sleep. Plus, I have been around the block enough to know that most of the moments could be googled or streamed later on to see the highlights if not all the debates the next morning.
So even though I didn’t watch the debates, since they occurred, the media has been filled with comments about what important statements came out of each night. Of course, the import of the statements might shift depending on what particular issue you care about. As one of my friends who did watch pointed out, one of the most relevant statements to the chronic illness community was when candidate Marianne Williamson discussed chronic diseases.
According to an article in Newsweek Magazine, candidate Williamson "created confusion" by comments like the following:
Clearly, this particular statement did not create confusion for me because I get the devastating impact of chronic illness. Of course, many of her comments filled the twitter-verse with derisive glee. But if you had one of the many chronic illnesses that plagues the United States, well her comment likely perked your ears. I admit that I don't know where her data is from or how reliable it is relative to the U.S. rate of chronic disease and that of other countries. But I think after viewing information on various reliable websites, it is at least clear that we have a problem that needs to be given serious consideration.
Candidate Williamson’s website has a section devoted to health care issues. While I can’t say that I’m on board with all of her ideas, a few resonated with me – some because I have suggested them myself. For example: "Provide patients with more robust ongoing support from nutritionists, health coaches, therapists and mental health, exercise specialists, and other peripheral lifestyle treatment providers."
I said basically the same thing in my Heart Failure 101 post. I also see benefit in her suggestions to “Fund programs in all our educational systems, pre-k through college, designed to teach nutrition and lifestyle skills to help cultivate long-term health”, and to “Take a national look at stress levels, and develop ways to lower stress societally.”
Will topics like this result in her election as our 46th President? I don’t have a crystal ball and I cannot begin to tell you at this point who I will vote for out of the multitude of candidates out there. I also can understand the concern some have regarding a candidate who does not have any governing experience. But I also caution that we should be leery of seeing her statement only as fodder for news pundits. Clearly the CDC and other sources establish that chronic illness is a serious health issue that will only deepen economic, medical and psychological consequences over time. Wouldn’t it be nice if someone would campaign to confront the issue head on with a pithy slogan like “Make America Well Again”?
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.