“When you see me I’m put together. My makeup is done, my hair is taken care of. I’ve learned all of the little tricks to look the most presentable with the littlest effort despite an abnormal illness.”
Rachel Allison wrote these words in her post, You Don't See the Worst Days of My Illness Because I Hide Them From You on a chronic illness blog called theMighty.com.
She continued, “I’ll smile, even if I’m in pain. I’ll sit quietly while my body yells at me. I do this to fit in. I do this to feel normal. I do this so others don’t have to focus on an illness they don’t know how to respond to. I do this so that maybe, every once in a while, I might get to seem like I’m not sick.
“You haven’t seen my worst days. Because I hide them from you. My husband sees them, my mom sees them. But the nature of my illness is that it asks to be hidden. The last thing your body wants on a bad flare day is to be somewhere that isn’t home; to feel the need to force a smile or try to look presentable. So I hide. Tucked in my little apartment, staring at the ever-familiar walls.
“You’ve never seen me pass out, but that doesn’t mean it doesn’t happen.”
Like Allison, more than 125 million Americans have at least one chronic condition (defined as some sort of disorder that lasts a year or longer, limits activity and may require ongoing care). Nearly half of those have more than one, yet it's not something openly spoken about.
Never Judge a Book by its Cover
You know that you feel your chronic back pain, but others only hear the words you say as you sit there hurting. The fact is, all of our chronic back pain shares one major characteristic — it's not visible without shining a bright light inside of you, thus the term invisible illness.
Examples of other invisible illnesses include:
- Allergies and Food Intolerances
- Rheumatoid Arthritis
- Chronic Fatigue Syndrome
- Chronic Back Pain
- Chronic Myofascial Pain
- Depression and Mental Illness
- Diabetes and other Blood Sugar Issues
- Digestive Disorders (IBS, Colitis, Celiac)
- Headaches and Migraines
- Heart Conditions
- Lyme Disease
- Multiple Sclerosis
- Neurological Diseases
- Sjögren's Syndrome
Those with invisible disabilities may exhibit varying symptoms such as:
- Debilitating Chronic Pain
- Cognitive Dysfunctions (brain fog)
- Learning Difficulties
- Mental Disorders
- Hearing and Vision Impairments
- Appetite Loss
These sometimes disabling symptoms can range from mild challenges to severe limitations and vary from person to person. Having chronic back pain can prohibit you from enjoying life in the way you once knew. We experience the same dilemma.
What it's Like Living with Invisible Pain?
Unfortunately, people often judge others by what they see, concluding that they are either capable or incapable based on the way they look. It may, therefore, be difficult to understand someone who “looks” fine but acts incapable.
The life of chronic back pain is many times riddled with what may feel like a barrage of insensitive encounters and never-ending whisperings. Comments are often made as to why you are often absent from the job or even tardy, why you no longer call or are available for social activities with friends, why you often seem short-tempered, withdrawn, depressed, or why you lay in bed (or the couch) so often. You want to say yes, but your chronic back pain screams no instead.
The chronic pain patient is often labeled as “lazy” while the disease wreaks havoc inside your body. Your bulging or herniated disc tug internally. And when trying to explain your disability, individuals are frequently met with the response, “But you look so good?”
This is, perhaps, one of the most frustrating things to hear for those who deal with chronic back pain. Unsolicited advice on how to get better only adds to the exasperation.
“I say all of this because it’s easy to judge a person’s condition by what you see when you’re with them, but you can’t rely on that. When you see me you may wonder why I can’t apply for a regular job. You may wonder why I write about my chronic illness so passionately. You may think I exaggerate because I enjoy pity. But when you see me, you aren’t seeing all of me. What you see one day does not accurately depict every day,” Allison wrote.
“Not just because I want them to understand me, but because I want them to understand others like me. I write because I want people to think twice before making assumptions based only on what they see.
“I try to be normal because I don’t want pity; I don’t want my illness to be the center of attention. I write because I want people to understand something that is so naturally hidden. I want them to know what happens when they don’t see me so that they can understand what my life is like.”
We couldn't agree more.
Let it Out
It's all about speaking your truth and bringing awareness. Don't hold your physical and mental pain in anymore —let it out. If you feel judged or unfairly questioned because of your chronic back pain, say so. Educate those who have questions or are skeptical of your condition. You can also tweet, snap or blog about it. Sometimes when you don't know how to express your feelings in words, it really can be easier sharing in a journal or on a screen. Whatever you do, get it off your chest.
Plus, awareness of any kind is key. If others are lacking the knowledge, why not provide them the information so they can see beyond your reflection? Whatever the way you decide, we have your back.
We may not look sick, but turn our bodies inside out and they would tell you different stories. — Wade Sutherland