Invisibility Isn’t Always a Super Power

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By Sarah Fowler

If you have been following along with our blog (particularly, “What it Means to be Disabled“) you’ll know that I, Sarah Fowler, have a debilitating disability called Ehler’s Danlos Syndrome (EDS). But, I don’t look like it. I look like your average 20-something, white female who participates in life the same way everyone else does. However, I like to use the analogy that if Ms. Frizzle were to shrink the class down and take them on a magic school bus ride inside of my body, they’d find a multitude of medical anomalies.

Now, let’s play a game. Close your eyes and imagine you’re standing outside on Chincoteague Island. You hear the clippity-clop of hoof prints approaching… what animal would you assume is headed your way? A horse, right? But what’s another animal that walks like a horse, talks like a horse, but is not a horse? I’ll give you a hint… it has stripes! That’s right, a zebra.

Zebra is an American slang term in the medical field for diagnosing a surprising, often rare medical diagnosis when a more commonplace explanation is more likely. It was coined in the 1940s by Theodore Woodward at the University of Maryland. He told his medical interns, “When you hear hoofbeats behind you, don’t expect to see a zebra.” Horses are obviously more commonplace in Maryland so statistically, you’d have a better chance at correctly diagnosing an individual as a “horse” rather than a “zebra.” [1]

So, EDS-ers have adopted the Zebra as their mascot. Many of us have been misdiagnosed because medical students continue to be taught to look for a “horse.” Consequently, we might hear things like [2]:

  • “But you look normal…”
  • “You’re too young to have so many problems…”
  • “You’re too old…”
  • “You can’t have that, it’s too rare…”
  • “No one knows what that is…”
  • “Why are you parking there, you’re not handicapped…”
  • “Why are you using a mobility aid, you look fine…”
  • Or my least favorite: “We never even talked about that in medical school!”

There are several types of EDS, however, I can only speak to the experience of hypermobile EDS. Regardless, EDS is a genetic connective tissue disorder that causes a defect in the collagen within our bodies (and no, collagen pills don’t work). Collagen is the glue that holds your body together. It lies in all of your connective tissue including, but not limited to skin, ligaments, tendons, bones, the lining of organs, the vascular system, and of course your brain.

Take a moment to imagine you’re playing a classic game of pin the tail on the donkey. First, you pin the tail on the donkey. You want to make sure it sticks, so you use the strongest gorilla glue you can find. Next, you attempt to pin the tail on a Zebra but all you have left is an old, dried-out Elmer’s gluestick that your kid lost under their bed God knows how long ago. Not 5 minutes pass before the Zebra’s tail falls to the ground. Meanwhile, the donkey’s tail stands strong, even after being knocked around.

So what does EDS entail (pun totally intended)? EDS most commonly leads to symptoms such as frequent joint dislocations, poor gastrointestinal functioning, faulty sensory input, increased pain sensation, fragile skin, and poor healing, just to name a few. EDS is widely underresearched, widely underdiagnosed, and widely unknown. In addition, there are few formal tests to diagnose EDS, specifically hypermobile EDS, which makes receiving a diagnosis nearly impossible. Most EDS-ers have other comorbidities, primarily Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). But those are for another day.

Despite the strides we made in the last decade, EDS-ers are still commonly misdiagnosed with fibromyalgia, multiple sclerosis, chronic fatigue syndrome, mental illness, stress fractures, arthritis, or our weight is to blame for all our problems. Want to learn more? Check out the video below:

While EDS is ever-present in my life, invisible illnesses can take many forms. Some more common examples include [3]:

  • Allergies and food intolerances
  • Arthritis
  • Cancer
  • Chronic Fatigue Syndrome
  • Fibromyalgia
  • Mental illness
  • Diabetes
  • Infertility
  • Digestive Disorders like Celiac, Chrons, or IBS.
  • Migraine and headache sufferers
  • Heart conditions
  • Lupus
  • Lyme Disease
  • Multiple Sclerosis
  • Epilepsy
  • Obsessive-Compulsive Disorder

What if we put our educator hats on? What invisible illnesses might our students have?

  • Learning disabilities
  • Autism Spectrum Disorder
  • Epilepsy
  • Intellectual Disabilities
  • Language Disorders
  • Apraxia
  • Sensory Processing Disorder
  • Auditory Processing Disorder
  • Deaf or Hard of Hearing
  • Various Other Rare Syndromes

Why is it so important to understand the implications of invisible illnesses?

For everyday Joes, it’s important to have a basic understanding of invisible illnesses for empathy’s sake. In order to help others, we have to understand where they are coming from. Knowledge is power. Additionally, understanding invisible illness is important to Worldwide Speech and other healthcare professionals so that students/clients/patients are seen as dynamic individuals rather than just our niche piece of the pie. They say curiosity killed the cat, but curiosity could have led to a referral to a specialist which could have led to a diagnosis that could give a rationale to otherwise inexplicable symptomatology and provide a possible treatment plan.

Common misconceptions about invisible illnesses

Because it’s vital to understand how invisible illnesses affect individuals whether you’re an educator, doctor, family member, or friend of someone with an invisible illness, let’s bust some common misconceptions: [3]

  • The way you look is the way you feel. Don’t forget that makeup is a magical thing for women and men alike, but some individuals don’t even need that to blend in covertly.
  • Invisible illnesses are not in the person’s head. Stress may add to the severity of invisible illnesses, but the root cause is not psychological.
  • Resting will make people feel better. Speaking from experience, rest doesn’t stop my pain. Even able-bodied individuals are unable to bank sleep.
  • If a person with an invisible illness is happy, they must not be in pain. Just because they are laughing or participating in activities, doesn’t mean the pain is not still lying under the surface
  • Being at home all day is a dream lifestyle. I can’t even tell you how many times this has come up in casual conversation. Being alone at home in constant pain and unable to participate in life per usual is by no means a dream lifestyle.
  • In many situations, mobility aids are only used as needed. Many people assume that because someone is using mobility aids, they can’t stand up or walk at all. Personally, I only use my mobility scooter for longer distances.

How does invisible illness affect people of color (POC)?

As always, we’d like to visit different intersections. Unfortunately, the intersection of POC who are living with an invisible illness is a place of discrimination, doubt, and systemic racism. Racial/ethnic minorities are 1.5 to 2 times more likely than whites to have major chronic diseases. They are also more common in low-income households, which is typically intertwined with POC. [4] Historically, POC also have greater difficulty receiving a diagnosis and/or receiving adequate treatment for their diagnosis. [5]

An example of this is evident in how the medical community used to portray chronic fatigue syndrome (CFS). CFS was originally depicted as solely a white woman’s disease. Black people were told they couldn’t get the disease, thus went unseen and undiagnosed for many years. [5]

What can WE do to help?

As a company that primarily provides speech/language therapy, occupational therapy, special education, and reading intervention, we come across students/clients with many of the invisible illnesses listed above.

We continuously commit to viewing our clients as dynamic individuals with many different intersections. After considering ALL aspects of their lives in accordance with The International Classification of Functioning, Disability, and Health (ICF) Model, we formulate an appropriate treatment plan. We value working together as a team to ensure that our services complement one another and that no disability is left behind.

What can YOU do to help?

  • First, adjust your expectations. People don’t need to disclose or prove their invisible illness or disability. This means we don’t need able-bodied individuals policing the handicap spots at the grocery store. [6]
  • Thank others for sharing their experience. It feels very vulnerable to share your unique struggles with others. If someone does share their disability with you, reply with something like “Oh, I didn’t know that. Thanks for telling me.” [6]
  • Validate, validate, validate. Sometimes people bombard you with fixer-upper questions like, “Did you clean it?” “Did you use hydrogen peroxide or alcohol?” “Did you go to the doctor?” “Have you tried [insert medication] or [insert eastern medicine]?” While it’s typically in good heart, we don’t want you to find a solution. Most likely, we’ve explored all of our options and only bring up the pain when it’s not fixable. Drop the questions and validate rather than trying to fix it by saying something like “It must be hard to feel like that.” or “I’m sorry you have to deal with this.”
  • Ask questions when appropriate. If you know somebody with an invisible illness, a good question is to ask is, “What’s it like to have or live with [insert disability].” Many of us appreciate when others want to learn because it helps raise awareness. [6]
  • Do your research. For many individuals with rare conditions, it’s exhausting to attempt to explain our conditions to those who don’t suffer from them. If you want to know more, google it! [6]
  • Most importantly, believe people when they tell you about their pain. Having a disability that others can’t see means that at some point you’ve most likely been accused of faking it. And not just from your average Joe, from healthcare professionals alike. Some people fight for years to be diagnosed. For example, endometriosis (fairly common) takes 7 years on average to receive a diagnosis. Simply acknowledge that their pain is real, and check if they need anything from you. [6]

10 Great Resources for Better Understanding Invisible Illnesses

  1. What you should know about invisible illness
  2. What is invisible illness? You don’t look sick…
  3. How to advocate for a child with an invisible disability
  4. Helping your child live with chronic illness
  5. 10 tips for teaching about invisible disabilities and bullying
  6. Coping With Chronic Illness
  7. Helping children cope with chronic illness
  8. What moms of kids with invisible disabilities want you to know
  9. Advocating for a child with an invisible disability
  10. How to manage a health condition abroad  

References

  1. Zebra (medicine)
  2. EDS Society: Why the Zebra?
  3. Supporting people with invisible illness
  4. Racial/Ethnic Disparities in Chronic Diseases of Youths and Access to Health Care in the United States
  5. When POC can’t get a diagnosis and go unseen
  6. Diversity inclusion: invisible disabilities