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What's it Like Living with Invisible Chronic Pain? —One Girl Tells All

Published December 21, 2017
| Written By SpineNation Editorial Staff  

Ladies and gents, meet Jessica Zapadka, as seen in Q&A: Invisible Illnesses & Fibromyalgia —“Just Because You Can’t See Pain, Doesn’t Mean it's Not Real.”

This young lady always has her hair and makeup on point. Even if she isn't feeling her best, she still gives it her all. If being sick taught her one thing, it's that you really have to focus on the things you enjoy.

“Even on the good days, where I have low pain and low sickness, I’m honestly just waiting for the next shoe to drop,” Zapadka reveals.

She understands that sometimes, things don't always work out because, well, greater things are in the works.

“It’s difficult though, while we’re blind and hurting and don’t know which way is up,” she recalls.

Depression and pain of any kind, go hand in hand so it makes sense.

“I know I will eventually feel sick so it’s just a matter of time. I’ve always struggled with depression and now, more so than ever.”

But at the same time, she says that if you have faith in anything, have faith in the fact that the universe has a beautiful way of straightening things out far better than we ever could.

“I still have hope though,” she says under her breath.

Being a Scorpio born on November 4, this gal is notoriously known for her gracious willpower, adorable shyness, artistic abilities, and inner strength. Surviving — no, thriving with invisible illnesses is like having something on the tip of your tongue you can never remember how to say, but it's so close.

“It may look good from far, but it’s far from good,” the West Virginia University Public Relations student says. “There’s always more than meets the eye.”

Ladies and gents, meet Jessica Zapadka, as seen in Q&A: Invisible Illnesses & Fibromyalgia —“Just Because You Can’t See Pain, Doesn’t Mean it's Not Real.” This time we're getting deeper. What is it really like living with diseases that aren't so easy to spot? You can try to visualize but unless you walk a day in their shoes, it may be hard to figure out — until now.

Let's slide on some sneakers, run a lap, and find out.

But You Don't Look Sick

This is Rule 99 of what not to say to someone with an invisible disease. Some people don’t understand the difference between being tired and physically ill. Zapadka says, “It’s a huge thing for me because before I knew I was sick, people were just like, 'You can sleep when you’re dead.'”

Her lack of energy gets lost in translation. “I thought I was being well… a huge loser about it,” she remembers. “I couldn’t muster the energy to join a conversation so I’d just sit there in silence feeling like that huge loser. I want people to understand that it’s okay to not feel well enough to participate in certain things.”

Let’s say you're invited to an event. You politely decline and decide to tell the party planner the truth. Whoever you said “No” to may post a message on your Facebook wall saying, 'But you don’t look sick? Why are you lying?'

Zapadka has had this happen to her on countless occasions and it's always the same thing. Yes, her nails are painted. Yes, her makeup is on fleek. Yes, her hair is perfectly straightened. “You see what I want you to see. Would you put something awful of yourself online? No!” Zapadka says.

It’s not that these people don’t care, it’s that they don’t experience the bad days. So in their mind, it’s almost as if they don’t exist. What she wants readers to take from this is to never compare your real life to someone’s highlights. “I think if that is really absorbed, you will be comfortable enough to say no and not feel bad,” she offers.

Of course, though, it's not that simple.

The Gray Area

“The people pleaser in me wants to say “Yes” every time. The pain inside, yells at me to say “No.” It’s a constant back and forth. It’s a tug of war — a battle,” she insists. For every time she says “No”, maybe another friend is lost. Then, after a while, they stop asking altogether.

“You have to learn how to only want to please yourself,” the fibromyalgia patient says. “And it’s a learning process. I’m not there yet, but I’m trying.”

All of this starts internally.

Inside a Beautiful Mind

Your beliefs become your thoughts. Your thoughts become your words. Your words become your actions. Your actions become your habits. Your habits become your values.

“When you live in chronic back pain that feeling of wanting to end it all can happen a lot. It can happen every day or once a week because you realize that all of this is for the rest of your life. I don’t get a day off. I will always be in or feel pain,” Zapadka shares.

On those days, she tries her best to enter into a positive mindset and stay there. We all have to make the best of our situations. Some days, you forcefully may have to put both feet on the floor and push yourself out of bed. “It’s not ideal. Yes, this sucks sometimes,” she describes. “But this is my reality and it’s all I have.”

With anything though, haters are going to hate. People only see the excuses or your absences, they don't see your pain.

Nay Say

“It can be really hard to not want to punch someone who doesn't get it in the face,” Zapadka adds, laughing. Clearly, she wouldn’t choose to need help showering. She wouldn’t choose to have problems going to the bathroom. She wouldn’t choose missing out on social events because she can’t get out of bed. So, when asked how she'd respond to a naysayer, she explains, “I’d simply say that no one would choose this life. No one would choose this.” Like we already said though, there is hope.

And it Floats

“I always say when in doubt, reach out,” the warrior declares. “I’ve found that support groups can be helpful whether in person or online.”

There are literally thousands of people going through exactly what we all are and most of these groups are virtual so you don’t have to go anywhere to get guidance. You can sign onto Facebook and join a closed pain group to find someone who can empathize with your situation.

“They know what you are going through. That in itself can allow you to feel less alone and depressed. They can help you on either a day-to-day basis or just to vent and get your feelings out. Anytime I’m feeling extra sad, I write a post.” she says. For chronic back and nerve pain patients everywhere, take notes. Zapadka encourages us all to join as many groups as possible because it’s not the same when someone can't specifically relate or understand how you are feeling.

“For some reason when others say, 'Oh, I’m sorry' or a cliché statement not knowing exactly what I’m even talking about, I can’t help but get annoyed,” Zapadka admits. “Of course, I appreciate the outpouring of love to whoever wants to give it, but it’s the lack of understanding that makes these support groups so powerful because these people know exactly how I feel.”

Other times, she'll put on some mascara, a smile, and fake it until she can actually make it. And you know, she will make it. So will you. We all will — with compassion, support, and positivity.

“Go ahead, tell me that I'm not good enough. Tell me I can't do it,” Zapadka concludes. “Because I will show you over and over again that I can.”

Updated: November 10, 2019

Information provided within this article is for educational purposes and is not a substitute for medical advice. Those seeking specific medical advice should consult his or her doctor or surgeon. If you need to consult with a specialist, you may be able find a health care provider in our Specialist Finder. SpineNation does not endorse treatments, procedures, products or physicians.

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