C.T.E., Case Management, IME, Medical Consultation

Invisible Illnesses You Don’t Need To See To Believe

 September 6, 2017

By  Deborah L Weiner Katz, OTR/L, CCM, CLCP

What sort of illness demands advocacy more than any other? The correct answer is the kind you cannot see. After all, what is advocacy if not activism aimed at increasing visibility for a group or condition? If nothing else, the increased awareness of invisible illnesses in recent years has compelled the average person to consider the subjective state of each person they encounter.

For those who seek to understand such illnesses, and perhaps even more so for those who don’t, we have chosen five very distinct examples of disorders that are not instantly recognizable, yet can be severely debilitating.


In the past, we have extensively covered traumatic brain injuries such as Post-Concussive Syndrome. To really drive our present point home, allow us to introduce you to a muscle control disorder known as dystonia. While its cause is unknown, damage to the brain’s basal ganglia or other regions that control movement is believed to be responsible in some way.

On the surface, the only visible indicators might be slow repetitive moments, abnormal postures or tremors. Meanwhile, someone suffering from dystonia may be experiencing foot cramps, a turning or dragging of their foot, rapid blinking or closing of their eyes and difficulty speaking. Symptoms may not appear at all, unless the person becomes overly tired or stressed. It can even occur with individuals who are otherwise in excellent physical condition, like personal trainers.

Obsessive Compulsive Disorder (OCD)

Any mental illness should fit the bill, but it seems our society still has a hard time acknowledging the plight of others as long as they can relate to their general mood. You won’t find as many relating to the uncontrollable obsessions and compulsions that characterize OCD. Mere stress-induced anxiety is still pretty hard to compare to anxiety caused by aggressively repetitive thoughts that make little to no sense.

Obsessions include not just thoughts but urges and mental images. Examples include unwanted forbidden or taboo thoughts, thoughts of aggression toward others or oneself, and constant fear of germs or contamination. It can even just be a need for things to be symmetrical or in perfect order.

Compulsions are behaviors. They range from excessive cleaning to repeatedly checking on things, such as whether the door is locked or the oven is turned off. People with OCD might be prone to excessive cleaning or hand washing. Before you zero in on the merit of good personal hygiene, it is important to remember that, cumulatively speaking, these behaviors become a major impediment to managing one’s daily life. As if that wasn’t enough, OCD also comes with tics, such as eye movements, facial grimacing and shoulder shrugging. Others are vocal, such as throat-clearing, sniffing or grunting.

Cotard’s Syndrome

You probably have never heard of this one. Call it by its other name, however, and your concern will be immediate. Otherwise known as Walking Corpse Syndrome, Cotard’s Syndrome is a rare neuropsychiatric disorder in which an individual suffers from delusions that he or she is dead or does not exist. This notion can be limited to a single body part or it can extend to the patient’s internal organs. It can be so real to the person that they even smell their own rotting flesh. If this still seems a bit unreal, just imagine the psychological ramifications these delusions can have.

Again, the cause is unknown, but lesions in the frontal and temporal regions of the brain’s right hemisphere have been associated with the disease. Based on its symptoms, Cotard’s has been broken down into three stages:

  • Germination stage – Depressive mood, extreme anxiety, hypochondria.
  • Blooming stage – Delusions of being dead or immortal.
  • Chronic stage – Severe depression due to emotional disturbances or paranoia.

Without a doubt, this is a syndrome more commonly associated with other serious mental disorders such as schizophrenia or dementia. It might also be related to brain atrophy, tumors, seizure disorders or traumatic brain injury. The bizarre effect of this disorder, which even leads to starvation and an inability to recognize one’s own face, is certainly not something most people readily comprehend. We can only try to reserve judgment the next time we hear of someone taking their own life.


Lupus may be a far more familiar disease, but it is still devastating in its own right. Not only is it invisible but it can be difficult to diagnose due to similarities between its symptoms and those of other ailments. The tell-tale sign is a facial rash that resembles butterfly wings unfolding across both cheeks.

Lupus is a chronic inflammatory disease which causes the body’s immune system to attack its own tissues and organs. Your joints, skin, kidneys, blood cells, brain, heart and lungs can all be affected by the inflammation. Some cases have been traced to birth but it can also be triggered by infections, certain drugs, or even sunlight. There are treatments to help control its symptoms; however, there is no cure.

Being a medical expert requires many years of education and a great deal of understanding. Taking the next step towards being an advocate demands something rarer of us: the ability to support individuals with disabilities even though we may never fully understand living with one. Invisible illnesses remind us that simply acknowledging their existence can be a source of great relief for so many.  We have only scratched the surface here.  It is estimated that 10% of people in the U.S. have a medical condition which could be considered a type of invisible disability.  Invisible Illness Awareness Week is September 28th thru October 4th.  You can find out more about it on Twitter and Tumblr @invisibleillwk.  If you or a loved one is suffering from an invisible illness and need assistance with care management, call us for a consultation.

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