Lonely with an Invisible Illness


On February 8, 2010, my life was forever changed when I was diagnosed by an invisible illness. In the beginning I was happy to have a diagnosis then the loneliness set in deeply. Have you ever experienced feeling alone even when surrounded by friends and family?

I didn’t feel alone at first.

After a while though the loneliness set in like a dense fog, the kind you’re unable to see thru.

In order to get through the thickness of the fog, I had to accept my life for what it had become, which meant I had to embrace being a Narcoleptic.

What’s narcolepsy? When diagnosed I assumed everyone knew what Narcolepsy was, even if they didn’t understand it’s underlying symptoms. I discovered, very quickly, I’d been diagnosed with a sleep disorder greatly misunderstood, often misdiagnosed with only 1 out of every 2000 thousand people diagnosed.

I became very aware, especially living in a small southern rural country town, meeting someone else with Narcolepsy would be unlikely but even less unlikely was finding people who understood this mysterious illness.

Oftentimes, those who did know what Narcolepsy was, figured I’d fall asleep while we were talking or I’d suddenly fall face forward asleep into my plate of food. I was questioned dozens of times how I was allowed to drive because they assumed I’d fall asleep at the wheel. To be completely honest though before my diagnoses, I would have thought the same things.

If I wanted to embrace my life, find my way through the fog, I had to accept what had become a daily enemy, Narcolepsy.

It wasn’t going away, couldn’t be ignored, so I had a choice, continue fighting the enemy or befriend the enemy, so I decided to become friends.

Since then I often wondered if my life changed the most on February 8, 2010 or on the day of acceptance, befriending, Narcolepsy.   Oddly, I don’t remember the exact day of such an influential decision, but the date doesn’t matter really, only the decision because that was when I decided to live again.

That was then…

This is now…2016…

Raising awareness around the sleep disorder Narcolepsy has become a personal endeavor. Twelve years searching for answers, getting misdiagnosed was a lonely time, but it was worse, more lonely, when I felt no one understood after getting my diagnoses of severe narcolepsy with cataplexy.

Although medicated, tiredness is still my enemy, most days. Most believe Narcoleptics randomly fall asleep, not so. In rare instances Narcoleptics will fall asleep in public, behind the wheel or while talking but it’s extremely rare.  It’s a misconception derived from lack of understanding and portrayal of Narcoleptics as being the individual randomly falling asleep in odd positions or public places.

Truth, be told, you’d never ascertain I’m a Narcoleptic upon meeting me or knowing me for years, unless I told you myself.

I admit it can be difficult; some days are better than others but aren’t most peoples?

Working to understand my illness has helped me get to know myself, understand my behaviors as well as be compassionate toward others, for I’ve not a clue what anyone is experiencing day to day, unless evident physically, if they don’t tell me. My illness may produce different symptoms than someone living with diabetes, heart disease, fibromyalgia, thyroid issues or any number of other illnesses, but one thing is the same; they’re all invisible.

We will all face challenges in life, some more than others and many will be difficult but not impossible, especially if you know you aren’t alone, which is my goal while advocating for Narcolepsy awareness. Knowing you aren’t alone in your battles alleviates, self-doubt, the misconception no one cares, understands or believes life can be altered by an invisible illness or disorder.

This isn’t to say people won’t still doubt, lack understanding or compassion. Unfortunately not everyone is going to share our views or believe our doctor’s diagnoses.

Tonya Steele with son Bobby Steele October 2013. I’m with my son on Clearwater Beach, Florida, living with Narcolepsy, an invisible illness, happy and not alone.

What matters is there are people who understand, care and will be there to lend a helping hand, shoulder to cry on or lend an ear so you can vent. Don’t hide behind your illness. I know today, six years after my diagnoses, there are people who won’t care if I did fall asleep in a plate of spaghetti (which hasn’t happened nor is likely) because they love me whether I do or don’t have Narcolepsy.

The secrets out…if you didn’t already know I’m a Narcoleptic, you do now, so join me in embracing your invisible illness, knowing you aren’t alone and letting others know they aren’t alone.

-Tonya Steele



VIATonya Steele
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I’m a dedicated, fair and objective reporter/journalist currently reporting and writing for the I-24 Exchange Newspaper, circulated and distributed each week to nearly 10000 residential mailboxes, in Northern Cheatham County, Tennessee. My main objective for Cheatham News is to provide current news coverage with a wide range of compelling topics that interest the youth of today, elderly and everyone in between through an online platform. Cheatham News will focus on local and county news including politics, breaking news, community schools, sports, city and county council meetings but there’ll be more the local news. I aspire to focus on what life is like, in our little corner of the world, where my family and I live in a small southern town. The southern sayins’, ole wives tales, recipes and mannerisms are a part of history I’d like to keep alive in the fast paced world of today. It brings me joy to share the uniqueness of life in a small southern town. You can learn more about myself, representatives and sponsors affiliated with Cheatham News and contributing authors biographies and credentials under the ‘About’ tab on the Home Page.