What Beauty Hides – Why Everyone Should Be Aware of Invisible Illness
September is Pain Awareness Month, and it is a very important time for those of us living with invisible illness. What is invisible illness? It is a condition that shows little or no outward signs, thereby rendering it invisible to others.
Because of this invisibility, it is often very difficult, if not impossible, for those of us living with chronic illnesses to be taken seriously.
After all, we look healthy and attractive, so what could be wrong?
Let me tell you what beauty hides, and why everyone should be aware of invisible illness.
The Sobering Statistics of Chronic Pain
According to the National Center for Complementary and Integrative Health (NCCI), nearly 50 million American adults have significant chronic pain or severe pain.
I Told You I Was Sick - My Story
I grew up in the 1980s, where there was a very clear line between what was considered “healthy” and what was considered “sick”. If you were sick, you were bedridden, had an obvious mobility device, or you were unable to see, hear, or speak.
If you weren’t sick, you were everybody else.
That’s how it was. Cut and dry. Black and white.
When I started having chronic stomach pain, uncontrollable diarrhea, frequent ear, nose, and throat infections, muscle pain, fatigue, and learning disabilities at the age of seven, you would think I would be considered sick enough to be taken seriously.
Well, I was. That is until the doctors could find nothing wrong with me. The conclusion that followed? I was making it all up in my head to get attention.
From then on, any health complaint I made was met with suspicion, anger, and even punishment. I was still taken to doctors regularly, but, I didn’t test positive for anything, so it only cemented the idea that my illnesses were somehow figments of my imagination.
When I moved out on my own at 17, I went to doctor after doctor after doctor, not caring who believed me or didn’t. I was absolutely, 100 percent determined to get a diagnosis. I knew I was sick, and I knew it wasn’t in my head.
In 2002, a naturopathic physician finally proved me right. At the time, I was down to 90 pounds, my hair was falling out, I had zero energy, and my skin was ashen. I was quite literally dying, and still, nobody believed I was really sick.
The naturopathic physician took one look at me and said, “Food is killing you.” He put me on an elimination diet and tested me for food and environmental allergies. I tested positive for so many things, it shocked him.
He also told me I had a very low platelet count (later diagnosed as ITP, an autoimmune disorder that causes your immune system to destroy your platelets). Platelets are responsible for clotting your blood, and my counts were far below normal.
From the elimination diet, I learned that I am incredibly intolerant to gluten. Gluten is a protein found in wheat, barley, and rye, and, if I eat even a small amount of it, my immune system starts attacking my digestive system and central nervous system.
Since not much was known about gluten intolerance in 2002, I had to do all of my own research online. When I told my family, who had doubted me for years, “I told you I was sick”, not only did they not drop to their knees and beg for forgiveness (OK, I know that never would have really happened), they STILL didn’t believe me!
I was told I had found celiac disease on the Internet and was just pretending to have it. It was even suggested that I had an eating disorder. Meanwhile, my platelet count continued to drop. Normal is within the 150,000 to 450,000 range. Mine would range anywhere from 40,000 to 70,000.
People not believing me never stopped me from following a strict gluten-free diet, even back in a time when I had to take food with me wherever I went. Family and friends got angry and insulted that I wouldn’t eat what they provided, but I didn’t care.
By 22, I was honestly too exhausted from fighting both my own body and with others about my authenticity, that I just let people think whatever they wanted.
In 2008, I figured out why I didn’t care about conforming to social norms, and, unlike others I knew, was never even tempted to bow to the pressure of “eating normally”.
I’m autistic. I read the books. I joined the forums. I did the tests. I presented my case to my family. Nope. Still making it all up for attention. I couldn’t possibly be autistic because I could carry on a conversation and look people in the eye. (Headdesk.)
Well, autism presents much differently in girls than it does in boys. We are expert social mimics, so it’s hard to catch on with us.
It wasn’t until 2014 that I finally had a complete nervous breakdown. It doesn’t surprise me in the least. I’m just amazed at how long I lasted without losing my mind.
In 2015, I received my official diagnosis of Asperger’s syndrome, along with PTSD, OCD, and traumatic brain injury (TBI).
Finally, after all these years, I am both validated and protected by my diagnoses. Now, I’ve dedicated my life to helping others going through similar situations.
What Beauty Hides – Why Sick Doesn’t Look Sick
In the media, we are only exposed to four different versions of sick: Colds and flu, accident recovery, disability (where a visible assistive device is used), and dying. That’s it. That’s “sick” in Hollywood.
What the media doesn’t tell you is that there are not four kinds of sick. There are thousands. People living with invisible illnesses such as celiac disease, ITP, OCD, PTSD, TBI, fibromyalgia, chronic fatigue syndrome, lupus, arthritis, diabetes, etc., do not look sick.
As a matter of fact, we can look perfectly healthy when we have the energy to put in the effort. We could be in agony on the inside, but, most of the time, you would never know it to look at us.
When we are in a flare, meaning our symptoms are at their worst, you may notice some outward signs such as extreme fatigue, glassy eyes, mental confusion, or a pinched expression on the face, but we usually find a place to hide before this happens.
We don’t like to flare in public. Too many of us have been told to “knock it off” in the middle of a painful and uncontrollable flare in the past. It’s just too traumatic and vulnerable for us, so we’re very careful what we show to the outside world.
Which, of course, can be to our detriment, since, if we don’t look sick, people think we can’t possibly be sick!
The struggle is real. Very real.
When the flare calms down, this doesn’t mean the illness goes away. It just goes back to being invisible.
It Takes Work to Appear Healthy
We want to live just like you do. We want to get up, dress up, show up, have fun, do errands, work, and interact with others…so, if and when we can, that’s EXACTLY what we do!
We take a nap, down some pain pills, slap on a coat or two of makeup, gulp back an energy drink, and get out there into the world. We may look as healthy as the next person in those moments, but that day or night out is going to cost us in ways you’ll never see.
Meanwhile, since most people see us in our best moments (and that’s when we take most of the photos we post on social media) the healthy members of society think we must be exaggerating or outright making up our conditions.
Put Yourself in Our Shoes
Imagine if you were sick and nobody believed you because you looked healthy. Imagine how isolating and strange and frightening that would be.
Right now, try to picture what it would be like for the people you rely on the most to not only abandon you, but treat you like a sneaky, attention-starved liar.
Many people with chronic illnesses say that the most devastating part of their illness isn’t the condition itself, but how often they are dismissed, mistreated, and invalidated in their everyday lives.
Invalidation is erasure.
It’s like being told over and over again, “You do not exist.” Despite our myriad symptoms and diagnoses, we STILL sometimes doubt our own sanity because we’re still treated like drug-seeking liars!
After all, many of us have never been healthy, so we have absolutely no idea what to check ourselves against. Doubt happens, even among those of us with the most debilitating conditions.
Every Month Should Be Pain Awareness Month
Every month should be pain awareness month because chronic pain is everywhere. It doesn’t discriminate based on age, social status, religion, gender, or creed, and it can happen to you or someone you love at any time.
You never, EVER know what’s going on with a person on the inside. No matter how “perfect” their lives look on social media or when you see them out and about, you are only getting a brief snapshot of their lives.
Be aware. Be kind. If someone tells you they’re sick, believe them. It really is that simple. If we could only do this one thing, the world would be a much better place.
Don’t let “beauty” fool you. After all, it is only in the eye of the beholder.
Contributed Post: Jaime A. Heidel, Health/Wellness Expert & Freelance Writer
A patient advocate, Jaime A. Heidel's website ‘I Told You I Was Sick’ has been informing, validating, and inspiring those with chronic illness since 2010.
Her guide, Beyond Chronic Pain: The Step-By-Step Guide to Healing Chronic Illness Naturally is available on Amazon.com. Pick up your copy today!
As a person that suffers from chronic pain and fatigue, I am so grateful to Jaime for sharing the true face of chronic, "invisible" illness in this moving piece. xo, Christina Lee | @thecleanmethod
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