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“It’s all in your head!” What a familiar refrain for those living with chronic illness, pain or disability. Doctors, friends, co-workers and family often make this statement when they can’t “see” what you are going through or find a diagnosis. The invisible nature of many illnesses and disabilities creates an atmosphere of suspicion or disbelief, even by those who are closest to you. People may say, “It’s all in your head” to imply that the person is just making up or exaggerating his or her condition. Many people live with the stigma of this label. Some even feel shame and believe so much that they themselves are to blame that they take their own lives.
Maybe it is “all in your head.” There are many conditions that exist as a dysfunction or disease of the brain. Depression, Alzheimer’s, schizophrenia, bipolar, autism, post-traumatic stress disorder (PTSD), traumatic brain injury (TBI), epilepsy, dyslexia, multiple sclerosis, Parkinson’s and ADHD to name a few. These are real disorders and diseases even though they are unseen, and in many cases go undiagnosed or misdiagnosed for years.
Jeff Vankooten, a professional speaker and Invisible Disabilities Association executive board member shares his story below:
Education is a real key in learning about the illnesses people are living with each day. The best way to get this education is to ask the people with the disorder or disease themselves. Take time to learn the language of invisible disabilities. Take time to listen and not pre-judge. Be a friend and comforter, not an accuser. We all need to make it a safe place for people living with brain illnesses, disorders and disease to share their difficulties and triumphs. Let’s remove the stigma and shame and be supportive in any way we can.
I have bipolar disorder. It has been my constant companion most of my life. It’s like a storm cloud that hovers nearby threatening every day to rain. I’m a different person now than I was before it “kicked in.” I’m more serious and less jovial. I’m more guarded with people. I mistrust my ability to make decisions. The varying highs and lows have created an inconsistent approach to life. Yet, in some ways, it has been a blessing. That may sound counter-intuitive, but I am a richer person because of it.
Here are what I find to be the benefits of living under the description of bipolar disorder:
• Depth of Empathy: I can uniquely understand the despair of others, and listen with an attentive ear to those who are suffering. That depth of empathy resonates with people who seek me out to be a compassionate ear and persistent source of hope. God has used this illness and redeemed it for the benefit of others.
• Strength of Relationships: When I was in college, my roommate learned how to monitor my emotional health. He was not intimated by, or afraid of, my invisible disability. When he sensed I was beginning to spiral into depression, he would get me up and we would walk around the neighborhood together. The walks were special because he would always provide “Swisher Sweet” cigars. They are thin, short cigars with a flavored plastic tip. I’m not sure why, but they played a big role in my recovery. Regardless if you have an invisible disability or not, ask yourself who or what are your “Swisher Sweets”?
Though having bipolar disorder has strained some relationships and ruined others, the one with my wife has been solidified. Often marriages dealing with spousal bipolar end in divorce. It can be too much and take its toll on the stability of the relationship. It hasn’t been easy. Nothing of significance ever is. But my wife’s “Swisher Sweets” of patience, compassion, and yes, a swift kick in the butt from time to time, has been invaluable to my life. She gives me the strength to carry on and the joy to participate in life. I love her deeply.
• Embracing of Moments: Depression has a tight logic. I can make a pretty convincing case as to why everyone ought to be bummed out. It’s critical to me that I don’t stay in my argument. I need to break through the closed system of despair by embracing each moment of every day that makes up the totality of my time. I relish the moments spent with my children and friends. I savor every dinner and I enjoy every ride at the amusement park. They are all precious moments.
They can’t just “get over it” or stop being depressed. If someone breaks an arm or a kidney fails, we don’t tell them to simply “snap out of it.” They need real help, and we need to make this world a safe place for them to ask for and to receive it. By listening, learning and loving, we can help them be Invisible No More!
This article was first published on Disability.Blog by Disability.gov. May 30, 2012.
Statistics – Chronic Illness
- Nearly 1 in 2 Americans (133 million) has a chronic condition
Chronic Care in America: A 21st Century Challenge, a study of the Robert Wood Johnson Foundation & Partnership for Solutions: Johns Hopkins University, Baltimore, MD for the Robert Wood Johnson Foundation (September 2004 Update). “Chronic Conditions: Making the Case for Ongoing Care”.
- By 2020, about 157 million Americans will be afflicted by chronic illnesses, according to the U.S. Department of Health and Human Services. Chronic Care in America
- That number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million. Chronic Care in America
- 96% of them live with an illness that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy. 2002 US Census Bureau
- Sixty percent of the chronically ill are between the ages of 18 and 64.
Chronic Care in America
- 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases
The Growing Burden of Chronic Disease in American, Public Heal Reports / May–June 2004 / Volume 119, Gerard Anderson, PhD
- 9 million people are cancer survivors with various side effects from treatment
American Cancer Society
- The divorce rate among the chronically ill is over 75 percent
National Health Interview Survey
- Depression is 15-20% higher for the chronically ill than for the average person
Rifkin, A. “Depression in Physically Ill Patients,” Postgraduate Medicine (9-92) 147-154.
- However, the significance of one’s faith has shown to lower one’s risk of depressive symptoms and aid one in better handling a stressful medical event.
Pressman P., Lyons J.S., Larson D.B., Strain, J.J. “Religious belief, depression, and ambulation status in elderly women with broken hips.” American Journal of Psychiatry 1990; 147(6): 758-760.
- Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides Mackenzie TB, Popkin MK: “Suicide in the medical patient.”. Intl J Psych in Med 17:3-22, 1987
- and more than 50% of these suicidal patients were under 35 years of age
Michalon M: La psychiatrie de consultation-liaison: une etude prospective en milieu hospitalier general. Can J Psychiatry (In French) 38:168-174,1993
- About one in four adults suffer from a diagnosable mental disorder in a given year;
Kessler RC, Chiu WT, Demler O, Walters EE. Prevalence, severity, and comorbidity of twelve-month DSM-IV disorders in the National Comorbidity Survey Replication (NCS-R). Archives of General Psychiatry, 2005 Jun;62(6):617-27.
- and more than 90 percent of people who **** themselves have a diagnosable mental disorder
Conwell Y, Brent D. Suicide and aging I: patterns of psychiatric diagnosis. International Psychogeriatrics, 1995; 7(2): 149-64.
- Four in five health care dollars (78%) are spent on behalf of people with chronic conditions
The Growing Burden of Chronic Disease in American, Public Health Reports, MayJune 2004 Volume 119 Gerard Anderson, PhD
- Those who use their religious faith to cope are significantly less depressed, even when taking into account the severity of their physical illness. In fact, the clinical effects of religious coping showed the strongest benefit among those with severe physical disability. Some 87 patients hospitalized with serious illness who also then suffered depression were followed over time in another study. The patients with a deep, internalized faith recovered faster from the depression, even when their physical condition wasn’t improving.
Kendler, K.S., Gardner, C. O., and Prescott, C.A. “Religion, Psychopathology, and Substance Use and Abuse: A Multimeasure, Genetic-Epidemiologic Study,” American Journal of Psychiatry 1997; 154: 322-329. Koenig, Harold G., Larson, David B., and Weaver, Andrew J. “Research on Religion and Serious Mental Illness,” in Spirituality and Religion in Recovery from Mental Illness, ed., Roger Fallott. New Directions for Mental Health Services 1998; (80).