Chronic and Getting Worse

February 18th, 2014

Ongoing Health Conditions

We live in an era that has seen amazing medical advances and ever-evolving health-care technologies, introduced by some of the most highly skilled physicians and researchers in the world. Yet 145 million Americans—almost half the population—have one or more chronic health conditions. By 2020, that number is expected to reach 157 million. The term chronic refers to medical conditions that develop slowly, last several months or more, and are often incurable. By contrast, acute conditions (like strep throat) often begin abruptly and last only a short time. The most prevalent chronic conditions include heart disease, stroke, diabetes, arthritis, and cancer.

The concept of “public health” began in the early 20th century and was focused primarily on fighting acute diseases, specifically infectious diseases, since tuberculosis, influenza, and pneumonia were the leading causes of death. Ironically, as more and more people began surviving acute illnesses, chronic diseases such as diabetes and hypertension increased. Americans were living longer, giving rise to other serious ongoing conditions.

We have a health-care system designed around past efforts to treat acute illnesses. Many public health researchers believe this system isn’t equipped to handle the growing number of people with chronic conditions, especially those with multiple chronic conditions. Chroniccare patients find navigating the health-care system to be extremely difficult, as doctors, hospitals, insurance plans, and government programs are more adept at dealing with short-term medical problems, not ones that require ongoing coordination of care.

Some people with chronic health conditions experience only occasional symptoms that can be controlled with medication or therapy. However, for many people, chronic disease severely limits their ability to work, go to school, or take care of routine needs. Likewise, while some chronic conditions are preventable or can be cured with better diet, exercise, and avoidance of tobacco and alcohol, many don’t have a known cause or cure (see the sidebar about autoimmune disorders).

Invisible Illness

According to the advocacy website National Invisible Chronic Illness Awareness Week, about 96 percent of people who are ill have illnesses that are invisible. People with such illnesses do not use a wheelchair or any assistive device and may look perfectly healthy, yet they deal with daily pain or discomfort and the emotional stress and anxiety that goes with chronic illness. While 90 percent of older adults have at least one chronic disease and 77 percent have two or more, it’s surprising that 60 percent of those with invisible illnesses are between the ages of 18 and 64. Recently, the American College Health Association stated that 24 percent of college students reported having a chronic condition such as diabetes, attention deficit disorder, psychiatric conditions, autoimmune disorders, or arthritis. Advocates are trying to educate universities on how to support these students and are encouraging them to expand their definition of disability.

What are examples of invisible illnesses or disabilities? It’s hard to list all conditions that fall under this category, but the following are some of the more common ones: type 1 and type 2 diabetes, lupus, fibromyalgia, Crohn’s disease, ulcerative colitis, bipolar disorder, painful bladder syndrome, epilepsy, asthma, migraines, depression, heart disease, injury-related pain, autism, chronic fatigue syndrome, severe pollen or food allergies, sleep disorders, and long-term side effects from cancer treatment.

Chronic pain, a subset of chronic illness, affects 100 million Americans. By contrast, seven million Americans are affected by stroke and 16 million by heart disease. Ongoing pain often results in the inability to work and therefore keep health insurance. According to one report, the annual cost of health care due to pain in the United States is estimated at close to $635 billion. This includes medical costs of pain care as well as economic costs related to lost wages and productivity. Chronic pain disrupts sleep, causes people to take work leave or change jobs, and for many requires assistance with daily activities.

A secondary problem caused by chronic pain is the rise in prescription drug use and abuse. Many chronic pain sufferers have a hard time finding treatments that help and therefore get frustrated by the lack of understanding from the medical community about the severity of their pain. On the other hand, prescription painkillers are the second most abused category of drugs in the United States, following marijuana, and are a major contributor to the number of drug deaths. This has led to a tighter regulation of prescription painkillers by government agencies and a reluctance among doctors to give patients these drugs.

Awareness and Stories

Why is it important to raise awareness of hidden health conditions? Symptoms that arise from these conditions are not obvious to the onlooker. Those with invisible conditions are expected to act like a healthy person because they don’t appear to be ill. Those who do speak up about their condition are often accused of exaggerating or faking their pain or illness. Many people living with a hidden physical disability or mental challenge can compensate and still be active in work or hobbies. Others struggle to get through the workday, and some cannot work at all. Many suffer from depression, and so others mistakenly believe that their mental outlook is causing their health problems, rather than health problems being the cause of the depression. As people of faith who seek to live out their calling by being compassionate toward those struggling with difficult issues, we need a better understanding of how these conditions affect sufferers. Consider some of the following stories from those dealing with invisible illnesses. 

Elaine: When you have an invisible chronic illness such as inflammatory bowel disease, you feel worse when others expect you to behave like a healthy person, because you look completely normal. If someone is in a wheelchair or on crutches, most people will happily open doors for them or find them a place to sit in a crowded waiting room. With invisible chronic illness, there are no physical cues to alert strangers that you’re suffering. I’ve endured the harsh stares of well-meaning people when I’ve used one of the handicapped seats on a train when they clearly thought I should be standing. They had no idea that I was struggling not to pass out and had spent most of the day in pain on the bathroom floor. You can’t start explaining the situation to everyone you meet, so you just try not to imagine what they are thinking (and try not to cry).
Jeffrey: I was diagnosed with type 1 diabetes at the age of 11. We had no family history of this autoimmune disorder, so it came as a shock to our family. There is no cure for type 1 diabetes, so I have to keep track of all carbohydrates that I eat and take insulin injections about six times a day. Dealing with blood glucose that is either too high or too low can be physically tiring, but honestly, it’s the lack of understanding from others that is the hardest. I don’t tell very many of my high school friends that I have type 1 (which is very different from type 2), because they think it’s caused by eating too much sugar or being overweight. The comments I hear the most are, “But you are skinny, how can you have diabetes?” and “You can’t have that, it has sugar!” Often these comments come from adults, such as school teachers and church youth workers.
Sandy: I’ve lived with painful bladder syndrome, also known as interstitial cystitis, since I was a teenager. It’s estimated that 12 million Americans have this disease, although most people don’t know what it is. When I try to explain the disease to people (damage to the inner lining of the bladder wall, which results in severe nerve pain), I either get blank stares or dumb advice. Some days are easier than others, but it does get very lonely. Because the pain causes frequent urination, I can’t go anywhere that doesn’t have easy access to a bathroom. Yes, I’d love to go on that mission trip or retreat, but I wish fellow church members would be more understanding when I have to say no.

Support Ministries

Congregational care ministries, like the health-care system, are primarily designed to address acute issues such as sudden hospitalizations, death, and other crises. If you are in the hospital for surgery, you’re likely to get a visit from your minister. If you deal with daily pain, it’s possible that no one will ever reach out to you, either because they don’t know or don’t know how to help. And it’s understandably hard to know how to support those with ongoing conditions who might not ever be healed. But support groups and training of clergy and lay ministers are a place to start. Reverend Liz Danielsen, chaplain and founder of Spiritual Care Support Ministries, says the best gift we can give to the chronically ill is time. “Simply saying, ‘I would just like to be with you.’ Jesus did that,” she says. “I think we need to talk less and be present more.”

Be sure to check out FaithLink, a weekly downloadable discussion guide for classes and small groups. FaithLink motivates Christians to consider their personal views on important contemporary issues, and it also encourages them to act on their beliefs.

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