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Are Vestibular Disorders Invisible Disabilities?

Daniel Pancy
Disabled sign on asphalt.

According to VeDA, vestibular disorders consist of the following disorders and syndromes.

“The most commonly diagnosed vestibular disorders include benign paroxysmal positional vertigo (BPPV), labyrinthitis or vestibular neuritis, Ménière’s disease, and secondary endolymphatic hydrops. Vestibular disorders also include superior semicircular canal dehiscence, acoustic neuroma, perilymph fistula, ototoxicity, enlarged vestibular aqueduct, migraine-associated vertigo and mal de débarquement. Other problems related to vestibular dysfunction include complications from aging, autoimmune disorders and allergies.”

Invisible disabilities have been defined as follows:

“In simple terms, an invisible disability is a physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities. Unfortunately, the very fact that these symptoms are invisible can lead to misunderstandings, false perceptions and judgments.

The term we define as invisible disability refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations, and vary from person to person.”

Related:What Meniere's Disease Has Given and Taken From Me

To look at me, a person with bilateral Meniere’s disease, benign paroxysmal positional vertigo and vestibular migraines, you would not notice that I am disabled. The vestibular disorders I have come with their own set of uniquely different issues, with some crossover as to be expected with any medical conditions. However, Meniere’s disease has a major difference. There is no cure.

Doctors can treat the symptoms. Doctors can perform procedures to alleviate and/or lessen the main and most problematic symptom, vertigo. It can be accomplished by chemically destroying the vestibular nerve through the use of strong antibiotics such as gentamycin directly into the inner ear. Vestibular nerve section is surgery for those that have some or most of their hearing left in the affected ear. It involves cutting the vestibular nerve. This will only stop the vertigo.

Endolymphatic sac surgery is a procedure on the endolymphatic sac of the inner ear. A small amount of bone is removed from around the endolymphatic sac, resulting in a change of the pressure of the fluid in the sac. Sometimes a shunt is placed to help release the excess fluid buildup inside the endolymphatic sac.

Related:Finding Balance in My Life With Meniere's Disease

All these procedures and others will help to eliminate vertigo but not the rest of the symptoms of Meniere’s, including hearing loss, tinnitus (ringing in the ears), aural fullness (feeling the ear is full or plugged), loss of balance, headaches, nausea, vomiting, sweating and diarrhea. Medication, diet, chiropractic maneuvers and vestibular rehabilitation may help to reduce some symptoms, but do not cure Meniere’s.

So what makes Meniere’s disease along with other vestibular disorders part of having an invisible disability?

Vestibular refers to the workings of the inner ear, particularly those that are responsible for balance. It’s invisible because you cannot see inside the vestibular system from the outside.

During a vestibular attack, you cannot see a person having vertigo. You only see the outside effects of vertigo. The vomiting. The confusion and fear on a person’s face during an attack. The lack of mobility. The same is true with tinnitus. You cannot hear the high pitch squeal, the jet engine roaring, the white noise static.

Related:The Part of Meniere's Disease That's Hard to Talk About

Even when a person with vestibular issues is not having an attack, the issues are still present, usually without any visible outward signs, unless you take the time to learn them. According to VeDA, a person may experience a variety of issues such as:

• Spinning or whirling sensation; a feeling the person or world moving when it is not (vertigo)
• Symptoms can be present while sitting still, in specific positions, or with movement
• Lightheaded, floating, or rocking sensation (dizziness)
• Sensation of being heavily weighted or pulled in one direction
• Imbalance, stumbling, difficulty walking straight or when turning
• Clumsiness or difficulty with coordination
• Difficulty maintaining straight posture; head may be tilted to the side
• Tendency to look downward to confirm the location of the ground
• Tendency to touch or hold onto something when standing, or to touch or hold the head while seated
• Sensitivity to changes in walking surfaces or footwear
• Difficulty walking in the dark
• Muscle and joint pain (due to difficulty balancing)
• Trouble focusing or tracking objects with the eyes; objects or words on a page seem to jump, bounce, float, or blur or may appear doubled
• Discomfort from busy visual environments such as traffic, crowds, stores, and patterns
• Sensitivity to light, glare, and moving or flickering lights; fluorescent lights may be especially troublesome
• Tendency to focus on nearby objects; increased discomfort when focusing at a distance
• Increased night blindness; difficulty walking in the dark
• Poor depth perception
• Sensitivity to loud noises or environments
• Sudden loud sounds may increase symptoms of vertigo, dizziness, or imbalance
• Difficulty concentrating and paying attention; easily distracted
• Forgetfulness and short-term memory lapses
• Confusion, disorientation, difficulty comprehending directions or instructions
• Difficulty understanding conversations, especially when there is background noise or movement
• Mental and/or physical fatigue out of proportion to the activity
• Loss of self-reliance, self-confidence, self-esteem
• Anxiety, panic, social isolation
• Depression
• Slurred speech

I have been verbally abused when using my disability parking tag. It didn’t matter that I was using my walker. I was screamed at by a woman who said I didn’t need the walker or that spot because she just saw me put my walker in the back of my car. According to her if I could do that I was a fraud, a faker, a user of the system.

Once while I was teaching, I showed up to work early and started having an attack in the hallway. I managed to get myself to the wall and “wall walk” my way down to my classroom. Another teacher saw me and called out, “Hey Pancy! It’s only 7 o’clock in the morning! You drunk again?” He headed to the principal’s office to report me. Prior to this, I had informed my principal of my condition, the symptoms involved and pertinent medical information.

Within minutes my principal and the teacher were both in my room. The teacher apologized. My principal brought me my rescue medicine and once I was stabilized, another teacher drove me home and helped me get situated. All this before 8 a.m.

So are vestibular disorders considered an invisible disability? The answer is yes.

Read more stories like this on The Mighty:

How Anxiety Can 'Talk' When You Have a Chronic Illness

When the 'Pressure' of Meniere's Disease Is Too Much to Handle

Why Defining Disability Can Be a Many-Edged Sword