Living With a Psychosomatic Illness

It can be difficult to cope with a chronic psychosomatic illness, not only because of the pain and dysfunction associated with the illness, but also because of common misunderstandings about the nature of psychosomatic disease. If you have been diagnosed with a somatoform disorder, you are likely to experience frustration, anger, and even depression because of these difficulties.

Psychosomatic illness is much more common than people generally assume. Almost everyone will experience somatoform disorder– psychological stress with physical symptoms– at some point in their lifetime. For most, these manifest themselves as stress headaches, IBS, or similarly manageable pain symptoms. For others, such as those with non-epileptic seizures or fibromyalgia, psychosomatic illness can be profoundly disabling.

I have had a predominantly psychosomatic form of irritable bowel syndrome, or IBS, since I was four years old. I lived in a constant state of moderate to severe abdominal pain, to the point that I vividly recall telling my teachers and parents, “I don’t have a tummy ache right now!” on the rare occasion that I wasn’t in pain. My family took me to pediatricians, gastroenterologists, and pediatric psychologists for years before they finally settled on a diagnosis: the pain I experienced was, essentially, all in my head. Although I had physical symptoms that were consistent with a spastic colon, anxiety was determined to be the primary causative factor.

As a child, and even to this day, I experience misunderstanding about the nature of psychosomatic illness. I remember a knot of pain twisting in my stomach when I read a note on my third-grade report card: “Juniper constantly complains of stomach aches. I find it suspicious that they occur most often during tests.” My teacher, like many, had failed to understand that, while my pain was triggered by anxiety, it was in no way feigned and had very real physical symptoms.

The medical community still does not entirely understand how psychosomatic illness works. Often, there are very clear, detectable organic causes of an illness or condition, but the symptoms seem to be predominantly stress-related. My husband, who has psychogenic non-epileptic seizures (PNES), also suffers from classic epileptic seizures and central nervous system abnormalities– the somatoform disorder is comorbid with a pre-existing, physiological condition. Likewise, many people with IBS and fibromyalgia, widely considered to be predominantly psychosomatic diseases, are found to have abnormalities that explain some, but not all, of their symptoms.

More often than not, those who are unfamiliar with psychosomatic illness will mistakenly believe that people with somatoform disorder should be able to simply “get over” their illness with the understanding that the disease is not “real”, but this demonstrates a clear misunderstanding of the nature of psychosomatic illness. Somatoform disorder has its genesis in stress, but its symptoms are still quite genuine. To demonstrate this, I often use the well-recognized example of a stress headache to demonstrate the nature of the condition. A person can know that their headache is caused by stress, but this does not make the pain disappear– nor does it make it entirely imaginary.

My husband’s psychogenic seizures are not at all distinguishable from his epileptic seizures– to him or to anyone else– except when they are being monitored with an EEG or other brain-scanning device. People with psychosomatic asthma can faint from hypoxia, unable to breathe due to the very real physical symptoms of their disorders. Once, my IBS became so severe that I had to be hospitalized for two days due to dehyrdration from constant diarrhea. After blood tests, stool samples, and even an invasive colonoscopy, doctors determined that, though severe, my illness was purely psychosomatic. A stress-related illness can still be immensely painful and even life-threatening.

When learning to cope with a somatoform disorder, whether annoying or disabling, it is important to rail against the misunderstandings and stigma related to the disease. People with somatoform illnesses are not crazy, are not faking their diseases, and are not deliberately exaggerating symptoms to gain attention or sympathy. We all, at some point, experience a physical manifestation of emotional stress. For those of us with somatoform disorders, the problem can be chronic.