Why I hope invisible diseases will one day be fully recognized
Our CF symptoms might not be visible, but they do affect how we live
A long list of medical conditions can be considered invisible because others can’t see their effects. Those of us living with cystic fibrosis (CF) understand the idea well since we commonly hear “You look well!” or “You don’t look sick,” even from people who know we have the disease. But we know that’s not the whole story.
CF is a genetic condition that causes dysfunction in every cell in our body. Given that, it doesn’t matter how well we look to others, because the trouble is inside our bodies. So why does our society only associate disability with a physical or functional deficit that can be seen?
When the toll of my cystic fibrosis became evident because of my shortness of breath, weight loss, and decreased endurance, my medical team suggested I apply for a handicapped parking placard for my car. At first, I didn’t use it. Part of me didn’t want to face that this sign represented my new physical baseline. Instead, I’d challenge myself to walk a little farther from a regular parking spot. I’d silently struggle to appear as able-bodied as everyone else.
Like many with CF, I don’t like to ask for help or appear weak. But as my disease progressed, saving those few steps made a huge difference. I started using the placard in the handicapped spot so I could continue being independent for as long as I could.
Handling the responses of others
I wasn’t yet on oxygen, so people sometimes gave me judgmental looks as I walked away from the handicapped parking spot. They were apparently expecting senior citizens, people in wheelchairs, or others with visually clear challenges to park there.
I remember more than one occasion when I thought I should walk more slowly or fake a limp just so people wouldn’t give me such disapproving glares. I was constantly preparing myself to respond if I were confronted. If they only knew my trip to the grocery store or doctor’s office that day took a herculean effort.
The day finally came when I was on oxygen full time, and I immediately noticed a change. Carrying a portable oxygen concentrator while wearing a nasal cannula was the visible justification some people seemed to need. All of a sudden people were asking me if I needed help or if I wanted their grocery cart so I wouldn’t have to walk extra steps to get one. They’d nod their heads and say hello, while before they’d disapprove with condescending huffs and puffs.
Why, I wonder? Why is this reaction to visuals still an issue? Why isn’t there more understanding and compassion, or at the least the benefit of the doubt before judgment?
I don’t know the answer. As someone living with a genetic, chronic, and often invisible disease, I look for opportunities to spread awareness, hoping to help make a positive change in many areas, including this one. After all, it’s not just CF that can get this reaction; heart failure, diabetes, kidney and liver disease, cancer, and a multitude of genetic and autoimmune illnesses can appear invisible, even though they can leave people with chronic pain, fatigue, nerve damage, and many other complications that affect daily living.
The world is filled with people whose bodies are fighting a fierce internal battle, often just to do mundane tasks that others take for granted. Many of them take medication to help. In cystic fibrosis, our bodies are working overtime just to breathe.
Along with the physical tolls, the daily mental and emotional costs of an invisible illness are heavy weights to bear. I’m disheartened that our society needs so much more education to recognize that often, we’re just doing our best to be as independent as possible.
As the popular saying goes, “Be kind, for everyone you meet is fighting a battle you know nothing about.”
I’m sure we all have times when living with CF is a challenge because of the judgments of others. I encourage you to share your experiences in the comments below, and maybe how you found a positive way to spread awareness and kindness.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.