From one perspective, chronic illnesses are actually indicative of advances in modern medicine – conditions which used to be fatal can now be effectively managed for many years. However, this thought may be of limited comfort to people who must go through life facing a chronic disease. Preconceptions and misconceptions about the nature of living with illness abound, especially among those who have never suffered or had to watch a loved one suffer through a lengthy illness. The “think positive” rhetoric endorsed by survivors and support groups alike may be helpful, but it is useless to attempt to simplify the experience of living with a disease down to “if you think you’ll feel better, you will.”
Elizabeth Holtzman at the University of Massachusetts writes, “There is a spectrum between the two choices of perfectly healthy to hopelessly ill.” Many people see only the extremes of the person entirely resigned to illness or the positive face many sufferers put on in public, not the struggle inherent in everyday life. Some chronic illnesses are highly visible, necessitating the use of wheelchairs or other apparatuses which many people immediately associate with impaired functioning. However, many illnesses are not, and there may not a simple lab test to determine who is suffering from these diseases. Fibromyalgia and chronic fatigue syndrome (CFS) are two such conditions. Because they must be diagnosed from clusters of symptoms rather than testing for a specific antibody or genetic marker, they have historically been misunderstood either through confusion with other disorders or dismissal that “it’s all in your head.”
This phrase is especially painful to those trying to live with the symptoms of fibromyalgia or CFS. These symptoms may be manageable, but they also may be actively debilitating, and sometimes the sufferer is put in the unfortunate position of having to defend the reality of her symptoms, or even the existence of the condition itself. Both CFS and fibromyalgia affect far more women than men; though the cause for this is not currently known, the gender imbalance has made it easier in the past (and, occasionally, in the present) for a male-dominated health profession to dismiss these illnesses.
Even when a disease is commonly recognized and overrepresented in the male population, it may go undiagnosed and therefore untreated for long periods of time. For example, symptoms of mesothelioma – a rare cancer which is found in disproportionately large numbers in construction and factory workers and navy men – are nonspecific and similar to those of other, less serious lung conditions, meaning the cancer often goes undiagnosed until the later stages. Obviously, a fatal disease such as this is significantly different from living with a chronic disease for many years, but some of the effects on emotional health can be the same: depression, uncertainty about the future, and feelings of isolation.
In rare cases, a usually fatal disease can become a chronic disease. While the median survival rate for this type of cancer is 9-12 months, some people have lived with it for much longer. Scientist and author Stephen Jay Gould lived with Mesothelioma Symptoms for 20 years before eventually succumbing to a different type of cancer altogether. Australian author Paul Kraus has a similar story; he was diagnosed with mesothelioma in 1997 and is still alive and healthy. Though it is important to maintain a realistic perspective on one’s health, it is also helpful to know that some – though very few – people have beaten the odds.
There is no single best or “healthiest” way to deal with a chronic or fatal disease. Managing the emotional consequences can be every bit as difficult as managing the physical symptoms, sometimes even more so. The American Psychological Association offers general suggestions, such as remaining connected to friends and family, keeping a daily routine, and paying attention to other aspects of one’s health. For those with a friend or family member dealing with illness, it is important to remember that some of the most difficult consequences of the disease may initially seem invisible. Every individual with a chronic illness is just that – an individual – and needs to be treated as such.
About the author:
Eric Stevenson is a health and safety advocate who resides in the Southeastern US.
For questions or comments about this article please feel free to contact him directly at firstname.lastname@example.org