Q&A: Invisible Illnesses & Fibromyalgia —“Just Because You Can’t See Pain, Doesn’t Mean it's Not Real.”
This West Virginia University public relations student spends her days living her dreams as a personal stylist while battling her invisible disease that no one sees or understands — she does and we do. From unconditional love and her inner friendship circle to the warrior's devoted family, this girl sparkles everywhere she goes. It's not about having what you want, it's wanting what you got.
So grab a tissue (just in case) and get comfortable while we unfold the untold words of inspiration through an invisible disease. This is her story.
Q: Hi, Jessica. Can you tell BackerNation a little bit about yourself and your personality?
A: Hey Macey. I like to think of myself as being witty, compassionate, and friendly. I always say, "I'm just flesh and bones, and a little bit of charisma,” (which is a song lyric from Jimmy Buffet’s Flesh and Bones). I’m a girly girl with a tomboy edge. And, I've come to realize that I'll always be a kid at heart.
Q: What are some of your hobbies and passions?
A: I love making others feel good about themselves. I love all things beauty. If you put the two together, that would be my dream job. I just love everything about makeup. People don’t realize it’s actually an art. I live for music and singing. I love David Cook, The Beatles, and my cats way too much. My family is my life. I wouldn’t be here without them.
Q: How long have you been a chronic pain patient?
A: It all started back in 2014. I remember visiting my best college friends in New York City, mid-February of that year. I remember wanting to have the best time. I remember being at a club.
“Guys I need to leave,” I whispered under my breath and out loud. I didn’t want to be that girl. Everyone was dancing and having fun. Then there was me — sitting alone on the couch literally falling asleep. No matter how hard I tried, I couldn’t stand up. I honestly couldn’t even sit without my eyes rolling in the back of my head from being so tired. At the time, I thought I was so lame. I thought I was being a loser, a Debby Downer. Looking back, I kind of knew how sick I was yet I had no idea the depths of it.
Caption: Zapadka (second from left) celebrates college best gal pal's wedding as her group of friends pose with the blushing bride.
Q: How did your journey with invisible diseases begin?
A: One day, I didn't feel well. As more days went by, I never got better. Then all of a sudden, even more, symptoms began piling up. I was getting migraines and waves of nausea 24/7. Then, I gained a ton of weight. It could have been because I was permanently exhausted — I couldn’t lift an arm to get out of bed. On top of it all, I started getting heart palpitations. I thought I was only getting them from too much caffeine. So I stopped drinking coffee yet it still happened.
Side note: I had no health insurance. I just turned 26 and was taken off my family’s insurance plan. At this point, I was so sick, the act of working was unfathomable — the furthest thing from my mind so without a job and no money coming in, I couldn’t afford health insurance on my own.
I’d wake up in the morning, and be so tired, paired with the worse anxiety I had ever felt. I always had small symptoms of anxiety throughout my life, but this time, it felt different. I’d be so anxious that I literally couldn’t get out of bed, go to work, or even hang out with people. I had this feeling of dread — along with everything else.
Q: When did this all come to a head?
A: By January of 2015, things got worse. I clearly knew there was something wrong with me. I knew it was time to go to the doctor’s office and get checked out. I put it off long enough because of financial issues. Then, I “splurged” and got health insurance.
That’s when they found an issue with my thyroid (they said I had an under-active thyroid gland), which triggered the anxiety I felt making everything else that much worse. Ironically, symptoms of an under-active thyroid are anxiety and weight gain. One doctor led me to another doctor, which led me to another one, finally giving me some pause as to what was wrong with me.
Q: Drum roll, please. What is your official diagnosis?
A: The official diagnosis is a long one. I don't think you're ready.
- Cluster headaches: Headaches that occur in patterns or clusters.
- Chronic nausea: In the past four years, I have not gone a day without throwing up.
- Polycystic disease: An inherited disorder in which clusters of cysts develop in the kidneys
- Grave's disease: An autoimmune disease that affects the thyroid
- Since I already had an under-active thyroid, the two together were responsible for over half of my symptoms
- Polycystic ovary syndrome: A hormonal disorder causing enlarged ovaries with small cysts on the outer edges
- Also affects the body’s ability to make insulin and maintain proper cortisone levels
- Fibromyalgia: Widespread chronic pain
I had been having extreme joint and nerve pain on top of everything else. My doctors did a point test, which is a medical diagnostic exam to find out why I was in pain. So, from my widespread chronic pain, they gave me the fibro diagnosis.
The doctor said that there was definitely something else wrong. So they kept doing blood test after blood test because they thought I also had Lyme’s Disease. The disorders normally have the same symptoms as fibro. and can be really hard to diagnosis. Then, I received the new results. I was now positive for lupus.
Q: What went through your mind as you were getting diagnosed?
A: When someone tells you, “You will never not be sick a day in your life,” it’s hard to be anything but overwhelmed. That’s the thing with chronic illnesses, you will never be healthy again — hence the name chronic.
I felt like nothing would ever be the same, it was sad, I cried — a lot. People I told began to downplay it — or at least in my head, it seemed that way. “Oh, you’ll get medicine and be fine.” “It’s not like you have a fatal disease or anything.”
Don’t get me wrong, I am so thankful to have a great support system. But, these people don’t experience what I do on a daily basis. I have to fight. I have to fight every day of my life.
It’s really hard to put into words. Yes, it was nice to finally know what was wrong with me, yet at the same time, my mind started down the rabbit hole. Because I was diagnosed with so many illnesses, it was a bit overwhelming, to say the least.
When I heard I had Grave's, I had to look it up. My doc even said that it was a good thing we caught it now because left untreated, I would go downhill fast.
Q: Today, how do your conditions affect you mentally?
A: So, before the diagnosis, I know I wasn’t living. Then and now, every day, I battle to be myself — to be my old self — to be normal. But it's like, I wasn’t normal. I’m not normal. I can't help but think I’ll never be normal again. I know I need to find my new normal.
I think, “I’m 26-years-old, and I will never be healthy again.”
It makes me sad. It’s scary — it scares me a lot. I try to keep positive about it now, but sometimes you simply can’t. I have to come to the terms with the fact that it’s OK. I realize now that you don’t always have to hold yourself together.
Q: Has your life changed since your diagnosis and can you explain what areas have been affected?
A: Honestly, everything has. My quality of life has transformed. Things have changed immensely.
My ability to work or keep a job isn't on the same track record I once knew. My last job didn’t work out. Actually, my last five jobs didn’t either. I can’t do the 9-to-5 thing because I cannot commit to it. I’d either stay and get fired or just not go. People (and coworkers alike) didn’t understand how I could be fine one second and then not fine 30 minutes later —welcome to my life, I'd always think.
I’m not social anymore. I’ve lost friends because of that. I can be characterized as flaky because I’ll make plans with every intention of fulfilling them, but when the time comes, I’m too sick to get out of bed, get dressed and appear with a smile on my face, ready to enjoy the festivities.
Staying active has changed too. It’s hard to exercise. Some days, it’s plainly hard to move. I had to buy a shower chair because my joints literally lock up. Sometimes, I can’t even pour myself a glass of water.
Q: Do you think there's hope though?
A: Yes. Out of nowhere, I found this styling job (that includes a broad range of beauty services) where I get to do what I love. It’s like all the pain of waiting and feeling so unproductive led me to this perfect job. The people and even the hours are flexible. My co-workers genuinely care. If I can’t make it in one day, they get another girl to fill in for me and make sure to ask how I am feeling at the end of the day.
Exactly how I said I’ve lost friends along the way, I’ve gained people too. People who are loving and understanding. People who force me to get out of my comfort zone and get moving, on the days my body allows. People who have taught me to look at things from a different perspective because perception is reality.
Q: When you do go out, what are the common stigmas you feel or face?
A: This is such a huge issue. I feel judgment and scrutiny — sometimes all day every day. Sadly, I understand why though. Before this all happened to me, I’ll admit that I was a judgy person. I was never overly judgy — just the normal amount I suppose (she said with a chuckle).
Before you’re physically aware of how someone who looks healthy is driving into a handicap spot, it’s hard to not judge. You’re obviously fine why are you parking there? I was that person on the other side, unaware — blissfully ignorant.
Take brain cancer as an example. All the symptoms are internal. You don’t see it. What people do see are the effects of chemo. It’s not written on their faces, but you’ll see the hair and weight loss and everything else that goes into it. But for invisible diseases like mine, it's not always that simple.
These days, I’m definitely more aware of everything that is the chronic pain lifestyle — not physically seeing it yet knowing it’s there. Faith is the substance of things hoped for with the evidence of things not seen. And people can’t always see it in me, but my widespread chronic pain is always there. I can at least count on that (Jessica said half kidding).
Q: Does support matter? If so, can you explain how having support has helped you heal?
A: Support is everything. I feel grateful for my friends and my family. Yes, I’ve had to put my career on hold for a bit. Yes, it made me feel weak, but my people always bring me back.
My best friend and roommate has and is always there for me —not only emotionally, but financially too. When I said I wouldn’t be here without her, I literally mean I wouldn’t be able to live without her by my side. I'd probably be under a bridge because I couldn't afford rent on top of my medication. She also sees me on a day-to-day basis. She sees my good days and my bad days and never judges. She never forces me to be social. She wants me to listen to my body and feel good. She doesn’t have to take all of this on, but she has and she does it so gracefully.
As for my family, I am equally as blessed to have them. I actually had to move back in with my mom a few years ago because I needed help with everything. It got to the point where I couldn’t make myself breakfast, do my laundry, brush my teeth, or shower without assistance.
I suppose some people don’t have those I have. And at the end of the day, yes my pain has affected so many areas of my life, but I try to carry on anyway. I know for a fact that I wouldn't be able to carry on without them. With them, I feel like I can make it.
Caption: The girls of the family gather together at a dance competition, celebrating life, literally (Jessica's nephew was just born).
Q: What last piece of advice can you offer to our readers?
A: You are stronger than you even know. When or if this happens to you, you will be pushed down, you will feel like you are at rock bottom, but just know it all happens for a reason. All of this will bring you to exactly who and where you are supposed to be. Yes, it does get tough, but you will carry on.
Today, I’m shown just that by finally landing my dream job and talking to people just like you Macey and BackerNation. We really are in this together. Thank you for having me.
Jessica, we should be thanking you for your detailed account and inspiration. We accept though. You are most welcome.
Sometimes you just have to put on some mascara and pretend to be psyched.
Jessica puts on a brave face (with some mascara, of course,) and carries on, even in the face of adversity — even when people try to judge her. She never backs down.
Even the darkest night will end and the sun will rise and that's what we learned here from Jessica. There may be pain in the night, but joy can come in the morning. We just have to wake up and get there. Thank you for the inspiration, truly.