Connecting with Positivity on Instagram

“Be kind, for everyone you meet is fighting a tough battle.”

This is one of many quotes that Jill Hetrick, a 41-year-old woman from Erie, Pennsylvania lives by.  Jill has a mission to help others who are living with narcolepsy better their lives by improving their outlook. 

Jill was diagnosed with narcolepsy in 1996 after years of symptoms dragging her down.  During college, she found ways to cope with her sleepiness, not realizing it was beyond the realm of what a normal student would experience.  She was determined to be a good student. 

 “If I had a group meeting, I took a five-minute nap before the meeting and showed up. I didn’t want to let other people down.” 

Jill had supportive roommates that were in many of her classes and studying with them kept her grades up. But when they graduated she was on her own. She realized the notes she was taking in classes were useless. “I had to keep pushing myself even if I just wanted to go lay down,” she said. “But after my roommates graduated I really had to figure out this sleepiness.” 

“Believe in yourself and there will come a day when others will have no choice but to believe with you.”

Jill described what it was like trying to save up the energy to do the things she loved.  She may stay in all day resting to be able to go to a softball match in the evening. She was always trying to adapt her life to accommodate her sleepiness. It was difficult since other people didn’t seem to have the same type of problem. She would break assignments down into small parts and just accomplish one at a time. She may have to rest in between, but she continued completing parts until it was done

Once she was in bed for the night, she wouldn’t fall asleep easily like in the daytime. Suddenly she would have the energy to get things done, but it was during the time when she needed to sleep to be prepared for class the next day. She struggled with the balance between taking advantage of that energy and trying to conform to a normal sleep routine.  “I felt like a walking zombie in the daytime but suddenly had the energy to get things done at night.”

In her last year of college, she finally got the test that revealed her sleep disorder. Narcolepsy is a chronic neurological condition that disrupts the sleep-wake cycle. The most well-known symptom of narcolepsy is sleepiness in the daytime, but it can also cause disrupted sleep at night.  

“There is no point in defeating yourself with negative thinking because you don’t get anywhere. If you practice more positive behavior things do get better,” Jill says.

Now that she understands that her fatigue is a medical problem and not something she can just push through, she accepts that sometimes it’s best to take a nap and continue the project after a bit of sleep. 

Jill noticed that when something happened that was really funny, her face would go slack and she would be unable to talk.  This is another symptom of narcolepsy, called cataplexy. Cataplexy is defined as sudden and uncontrollable muscle weakness or paralysis that comes on during the day and is often triggered by strong emotion, such as excitement or laughter (National Sleep Foundation).  

“When I was in college and I was busy with cross country, softball, and my three jobs I had a lot more cataplexy. Now that I am living at home with my mom, I don’t have to overstress myself and the cataplexy is under control.” 

Jill still has cataplexy at times but it doesn’t affect her quality of life.  She gives credit to her mom’s support.  She also takes medication to manage her narcolepsy with cataplexy.

“Mom is like my second brain,” she says. “People with narcolepsy need a good support system, and when those people take some of the load off of your shoulders, your body can function better.” 

“Though no one can go back and make a brand new start, anyone can start from now and make a brand new ending.” 

In the beginning, Jill refused to believe that she had narcolepsy. She doesn’t feel like she handled it well in the early years. Now she has a different outlook on life and is able to stay positive. There are so many tools out there you can learn from. “I had to learn all of this stuff by going through it and I don’t want people to have to suffer and waste years figuring it all out.” 

Jill shares tips and tricks with people when they chat with her on Instagram. She likes to use natural methods to improve her health like practicing proper sleep hygiene, using aromatherapy, or taking a short walk to allow the sleepiness to pass.

When Jill sleeps, she runs.  Not literally, but she has vivid dreams about her college days.  “I joined the team in college for two years and was the number two runner.” She shared proudly, “I was a natural but never saw it at the time… I am blessed that it came into my life.”  Physically she isn’t able to run anymore but she still loves exercise. 

 “Water aerobics is the closest feeling I can get now that comes a little bit close to how I felt when I ran.  I’m very proud of my running accomplishments.” While Jill no longer runs in real life, she does participate in charity walks, specifically the Erie Highmark Walk for a Healthy Community. 

 Jill has a degree in advertising and a minor in marketing so she wanted to put some of her sales skills to use to raise money for the walk. That is how I got to know Jill.  She messaged me on Instagram to see if I’d be interested in joining her on the walk.

I scrolled through her account, curious about this person that was asking me to do something so selfless. Her feed is full of positive quotes, pet rats, and uplifting messages for anyone.  She has over 1,000 posts and I haven’t seen a single one that is negative.

“There is no point in defeating yourself with negative thinking because you don’t get anywhere. If you practice more positive behavior things do get better,” Jill says.  

Jill reaches out to a lot of people struggling with their narcolepsy symptoms on Instagram.  She chats with them and encourages them to stay positive. She sends direct messages with positive quotes throughout the week to uplift many of her contacts.

Jill hasn’t had the easiest path but believes anyone can make a new future. She became more active in the last year after her father passed away. 

“I wasn’t so positive after my dad passed, but I realized that something good should come from it because he led a good life. My dad had a purpose, and that’s what I’m looking for.  Even if I can reach one person, its quality over quantity.”

Follow Jill on Instagram @hetrick002! Send her a message or a positive quote that she can pass on to others who need it!