“But you look so good!”
“At least you’re not dying!”
“All you need is some sleep and you’ll be fine.”
These are just some of the things people diagnosed with invisible illnesses have been told. As a society that requires visual proof that attests to a reality that is believable, we struggle mightily when people tell us they have an illness we cannot see. Invisible diagnoses do not discriminate and affect nearly 96% of individuals currently living with chronic, invisible conditions. With that many people affected, you might think we would have a real understanding of these diagnoses and the limitations they impose. Sadly, that is not the case, as we have a lot more to learn about these conditions and the people who struggle with them on a daily basis.
What is an Invisible Illness?
Despite variations in the myriad number of invisible illnesses, there are a few characteristics they all share. In addition to their presence being less than obvious to most, they are chronic, incurable, and cause some level of pain or distress on a regular, consistent basis. In addition, those diagnosed with an invisible condition typically take medication to manage one or more symptom. In consonance with their indiscriminancy, invisible illnesses can be physical, emotional, or a combination of the two.
Assumptions, Judgements, and Stigma
The ability to see someone’s wheelchair, cast, or hearing aid clarifies to onlookers that an illness or limitation is present. The teenager talking to himself in public, the woman repeatedly making sure her car doors are locked, and the disheveled gentleman wandering aimlessly, all let us know in some form or another, that they too, are experiencing impaired health. That awareness is often accompanied by sympathy, care, and at times pity. Whether these reactions are appropriate or not, they engender a degree of understanding in those around them.
Individuals with digestive disorders, chronic fatigue syndrome, or fibromyalgia however, do not experience symptoms that are obvious to others. These invisible diagnoses are real, chronic, and cause tremendous amounts of pain. In spite of that however, they are frequently discounted as disabilities, while sufferers are thought to be not quite “sick enough.” The people who deal with these conditions often experience manifestations of their illnesses that only they can identify. And despite their daily struggles with these conditions, far too many are left unheard and unseen, particularly when they most need support.
Can you imagine someone pooh poohing your pain or discomfort? What about asking you to explain why you are parking in a handicapped spot? Would you want to explain your condition over and over again? For people with invisible diagnoses like the ones listed below, these issues are part and parcel of their diagnoses and daily lives.
The symptoms of fibromyalgia include widespread pain, muscle stiffness, extreme tiredness, and impaired cognitive abilities. There is no known cause of fibromyalgia, though it may be triggered by stressful situations or illness. Women are diagnosed more often than men and opioids are used for pain management. Undetectable by blood tests and X-rays, fibromyalgia is diagnosed when all other potential diagnoses have been ruled out.
Chronic Fatigue Syndrome
Characterized by extreme fatigue that cannot be cured by a good night’s sleep, Chronic Fatigue Syndrome is a misunderstood diagnosis for which there are no tests or scans that can determine its presence. Middle aged women are diagnosed more often than men and causes are thought to be genetic, stress related, or the result of environmental factors.
Irritable Bowel Syndrome
Like other invisible diagnoses, there is no known cause for Irritable Bowel Syndrome (IBS). It typically affects women and can include chronic constipation, diarrhea, or a combination of both. IBS does not cause intestinal damage, cannot be seen in scans, and contributes to quite the conundrum given the gas, bloating, and bowel habits that characterize the condition. Stressors and certain foods have been identified as causes of IBS and there remains no specific or long lasting way to treat the condition.
Factors Affecting the Treatment of Invisible Illnesses
In order to increase public awareness of invisible diagnoses and the ways in which they impact patient welfare and quality of life, a number of changes in the ways we perceive of these diagnoses must take place.
The long and short of it is that patients need to be believed. By hearing them out and lending a hand when necessary, the medical and lay communities alike are able to legitimize their suffering and overall experiences.
Individuals who experience pain that others cannot see should not be written off as drug seeking. In fact being ignored, disregarded, or doubted can lead to dangerous consequences, such as the pursuit of illicit drugs or alcohol to numb the pain. By ignoring the safety risks that may lead to maladaptive conduct as a means of coping, we continue to delegitimize and belittle their pain and their integrity.
Physicians need to be better equipped at dealing with invisible illnesses, by becoming more knowledgeable of the research that is available, and pursuing additional research, too. Doctors must also acknowledge that despite any best efforts, training, and conviction to their patients, they cannot make everyone’s pain go away.
Body Systems and Wellness is located in Glendale, California, with Dr. Shahen Kurestian, DC at its helm. Dr. Kurestian understands that patients must be listened to and heard and is a wonderful resource to patients who need their diagnoses acknowledged for what they truly are.