The "Life Problems" Comparison Game: On Sharing My Chronic Illness When Other People Have Problems Too

Last year was a roller-coaster ride— for my life, for the world, and for this blog. 

Last year I decided to use this blog to share my story with the world. More specifically, I decided to share my story with those who were unaware of the fact that many of their fellow humans walk around every day with an invisible illness hiding just below the surface. I just wanted to pop a few bubbles of blissful unawareness— that's all.

But then Covid-19 kinda took over the world, and all of a sudden everyone was aware. Sickness was (and still is) everywhere, and it was definitely invisible. All of a sudden, every single human on the planet went from being "presumed healthy" to being "presumed sick". 

So then where do I fit in? 

That's what I got stuck on, why I haven't written in pretty much forever. Scratch that— that's why I haven't posted in forever. I've spent hours drafting blog posts, making everything perfect, and then totally chickening out before hitting that big shiny "Publish" button. I'm not even sure I can explain why— something along the lines of, Why would anyone care what I have to say? They're all busy worrying about their own problems. And look, their problems are way worse than mine. What right do I have to complain about my tiny little health hiccups right now? 

So here's me, talking to the me from seventeen months ago who lost her nerve to write:

_________________________

Dear self,

If we play the comparison game, you definitely won't win. Sure, you may have issues, but we both know warriors who are fighting far more drastic issues than yours. So don't even go there. Just don't.

Wow, you just went there. Okay. Do me a favor and stop looking at the differences between you and all the other hurting people in the world. This "ranking system" you've got going on in your head, the one where you decide how much love and care and attention a person deserves based solely on their life experiences, yeah... that's got to go. I'm pretty sure determining a person's worth is God's arena, not yours. 

Could your illness, your life situation, your family drama— could they be worse? Yes, definitely, absolutely.  You and I have that magic ability to dream up a million different ways everything in our life could evolve to "worst" in an instant. But, my dear self, however much "worse" your life could be, none of those possibilities negate the fact that you are struggling right now.

You may not be facing death, but you are facing darkness. You may not be paralyzed, but you are weak. You may not be alone, but you are lonely. 

Whether or not the person next to you is facing their own demons, that doesn't change the fact that you are indeed facing yours. And no matter how sick you are or aren't, that doesn't change the ailment of the person sitting next to you.

Dear self, there's really no way around it— no matter how loud you scream "I'm fine", it will always be a big fat lie. Stop pretending to be fine when you're not.

Know who else isn't fine? The person sitting next to you. 

Instead of looking at the differences, look at the similarities. What do you, with your chronic illness, have in common with the person sitting next to you who is hurting from their own version of trauma?

You both are hurting, obviously, which means you both have the capacity to feel pain. And recognizing pain presupposes that you both know what it is like not to feel pain. You both have memories of an existence before the pain began. Underneath whatever "strong front" gets you through the day, you and the person next to you probably feel like little children who just want everything to be okay again. And, more likely than not, you both know that the end to your particular pain is nowhere near. 

So then, if magical healing isn't readily available, what then should your goal be? May I suggest: Comfort. Companionship. Knowing that you have a buddy at your side as you go to war.

We've all got our demons to fight. Some are physical, some are mental, some are bigger than we ever could have imagined. They are all definitely very scary.

So yeah, I know you're scared. 

Know who else is scared? The person sitting next to you. 

Fear has a funny way of backing off when spoken out loud. Not completely, not magically, just a little bit. Enough to be worth a try. So maybe, when the time is right, speak your fear. Swallow your social fear just enough to tell one other person in the world how many more fears lie just beneath the surface. 

I dare you. 

What's that, you're tired? Too tired of the pain, too tired be brutally honest today? 

Here's some brutal honesty for you: YOU ARE NOT OKAY. Stop telling yourself that you're fine when you aren't. Just because the person next to you might have it "worse," that does not strip away the reality that your life is less-than-peachy too. Illness is a type of trauma. YOUR illness is a trauma— a trauma that tiptoed its way into your life and then smashed every single hope and dream you ever had for your future. Dear self, please be honest with yourself and with others. You may not be mourning a lost loved one, but you are indeed mourning the life that you can never have again.

My dear, chronically ill self, the truth is that you are sad and you are hurting and you will be hurting for a very long time. And that's okay. It's okay to listen to your body, to hear your hurting heart, to validate your own pain.

But the truth also is that the person next to you is hurting. And whether you acknowledge your own hurt or not, that person will still be hurting. Hiding your pain doesn't erase their pain. But maybe, if you speak up, just maybe the person next to you will be willing to share their pain with you too.

Maybe together you can find comfort in the pain.

You'll never know unless you speak up.

I dare you.

_________________________

Thanks for coming to my self-talk TED talk.

Please know that I am praying for you, that you will find the strength this week to be brutally honest— when the time is right. 

With all love and respect,

Bonjé

P.S. Do you have a chronic illness buddy? A life-hardship-pal? Is it hard for you to be brutally honest with yourself? Tell me all about it!

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Dear Doctors, Please Stop Telling Me I'm Pregnant: My POTS Diagnosis Story, Part Five

Welcome, dear friend! If you missed the earlier parts of my diagnosis story, catch up here:

I Promise I'm Not On Drugs: My POTS Diagnosis Story, Part One

The Most Terrifying Night of My Life: My POTS Diagnosis Story, Part Two

Leaving My Health Behind in the Dust: My POTS Diagnosis Story, Part Three

My Illness Forced Me to Accept Help: My POTS Diagnosis Story, Part Four

PSA: There are a lot of things that could cause a girl to skip her period.

For example, if a girl's body is suffering from a severe illness that has neither been diagnosed nor treated, her body might just decide for a while that dropping an egg sounds like too much work. Makes sense, right?

Feel free to pass that memo along to my doctors.

Every single waiting room intake paper contains the same question: "When was the date of your last period?" For at least three or four months, I had only one date to write on that wretched piece of paper. So during those months, my doctors considered that the likely cause of my so-called "mysterious" symptoms was actually pregnancy.

Although multiple doctors have played the pregnancy card (especially when my parents were with me at my appointments, thus motivating me to "misrepresent my sexual activity"), one particular instance comes to mind.

A quick bit of context for today's story: I had just returned from spring break and was ready to finish out my second semester of freshman year. But shortly after my return from break, I came down with a fever which confined me to my bed. Initially I didn't worry about the issue too much; I figured that I had probably caught some germs while traveling. But after my fever persisted for a week, my brother and my boyfriend took me to the all-too-familiar Emergency Room.

I told my E.R. doctor that I had a fever. I also told him that for the last few days, my head had constantly felt like it was going to explode from the pressure inside. Every time I tried to stand up, I lost my balance and my vision was instantly obliterated by a thick sheet of silvery stars. And my sheets were drenched with sweat multiple times each day. I could literally wring drops of sweat from my pajamas. Finally, just to add a cherry on top, gastrointestinal issues had been bothering me as well.

After describing my symptoms, I explained to my doctor that I had a history of undiagnosed illness and non-epileptic seizures. I voiced my concern that this fever could somehow be related, and I asked my doctor to run some tests to identify its cause.

I didn't have a stuffy nose or sore throat. But just to be safe (it was flu season after all) my doctor tested me for various bacteria and viruses. Everything came back clear, so then my doctor jumped to the next likely conclusion: He insisted that I must be pregnant. (Along with skipped periods, a fever can actually be an early sign of pregnancy.)

But I knew that there was no possible way I could be pregnant. Sure, I'm a young and pretty college-age girl with a boyfriend, but that doesn't mean squat. I've never had sex and I don't intend to have sex until I am married.

I tried to explain this to my doctor. I tried to explain that I'm a straight-A student at a conservative Christian college. And I don't just follow my college's rules because they're there; I know that my actions are answerable to God. I promised my doctor that nowhere during my spare time was I getting hanky-panky with any sperm factories. (Spare time? What spare time? I had a full course load and I worked hard for those straight A's! Spare time did not exist in my life.)

All I could think was: This doctor is so stupid. If I'm pregnant, then God must have chosen me to be the second virgin Mary. I wish my doctors would stop making false assumptions about me and start actually listening to me instead. 

But my words meant nothing to my doctor. He assumed I was lying. So I did the only thing I could do. I peed in a cup. (Hmm... I wonder how much my parents had to pay for the test just to prove this doctor wrong??)

Then we waited for the test result. And... surprise! No baby on the way!
Phew, I was really (NOT) worried there for a second. Now will this doctor listen to me??

At this point my doctor didn't know what to do. He administered an IV for hydration, but was unable to help me further.

I was dismissed from the E.R. that night with the diagnosis of...
wait for it...
a fever. 
_________________________

To this day, I don't know exactly what caused that fever.

My working theory at the time was that the twenty-something supplement pills per day which a naturopathic doctor had prescribed to cure me were actually making me sicker. I had already experienced an allergy to the anti-anxiety medication given to me by an earlier E.R. doctor (yes, the doctor in part one of my story), so I thought perhaps my body didn't like these new chemicals either. So I stopped taking all of my supplement pills, and my fever finally broke a few days later.

Looking back now that I have my actual POTS diagnosis, I have another theory: It is very possible that spring break was just so stressful that it triggered an extreme flare-up in my body.

During that spring break I had opened a giant metaphorical can of worms from my past, and the mental stress triggered by that situation hit me like a train. (I don't want to hurt anyone involved, so I won't tell details.) My anxiety spiked intensely and I battled nightmares for months after that spring break.

Along with being mentally drained, I had also drained myself physically because I had spent the majority of my time during spring break painting rooms in my parents' new house addition. So all of this physical and emotional stress intertwined to create a very exhausted Bonjé. And I've since learned that this POTS illness in my body kinda likes to jump in and take over anytime I let myself wear too thin. Each flare-up is different, and these days I've learned to just do nothing but rest until the flare runs its course.

I will never know for certain why my body decided to ignite a week-long fever after that spring break. What I do know, though, is that my dorm room positively reeked of sweat after that fever finally broke.

I also know that Christ will always be my strength, even when I am too weak to stand up. I invariably find myself turning to one particular Bible passage during a flare-up. If you find yourself wearing thin today, I encourage you to find comfort in these words from the apostle Paul:

"I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." (2 Corinthians 12:7-10 NIV)

Your weakness,whether physical or otherwise, does not define you. If you have the grace and strength of Christ in your life, then His vast love for you is the only thing that defines you.
_________________________

Read the next parts of my diagnosis story here:
My Symptoms are More than Just Mental Illness: My POTS Diagnosis Story, Part Six
Finally, An Answer: My POTS Diagnosis Story, Part Seven

Stay strong this week as you rest in the power of Christ. I'm praying for you.

Bonjé Gioja

P.S. Have you ever had a doctor accuse you of lying? What do you think caused my fever? And when you face struggles of your own, where do you seek encouragement? I'd love to hear your thoughts below! :)

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My Illness Forced Me to Accept Help: My POTS Diagnosis Story, Part Four

Did you miss the beginning of my diagnosis story? No worries! Catch up here:

I Promise I'm Not On Drugs: My POTS Diagnosis Story, Part One

The Most Terrifying Night of My Life: My POTS Diagnosis Story, Part Two

Leaving My Health Behind in the Dust: My POTS Diagnosis Story, Part Three

After receiving no answers from my doctors, I grew tired of feeling sick and useless at my parents' farm. I longed to get out of the house and return to school. I missed my brother (who was also a student at my school). I missed my friends and my boyfriend terribly. And I still stubbornly refused to abandon hope of passing my first semester of college classes. So after being absent from school for more than a month, I finally returned in time for the last two weeks of the semester.

I honestly had no game plan for managing my health at school. My seizures still occurred multiple times each day. But at least the feeling of conscious paralysis had become a bit less frightening to me. Somehow during my time at home, I had learned to relax and just wait out each seizure instead of panicking. Avoiding panic during a seizure also seemed to reduce the chance of triggering a subsequent chain of seizures which would last for hours. This slight improvement wasn't much to go on, but it did give me hope that I could somehow learn to survive with my seizures at school.

My boyfriend Josh and I had stayed in touch during my absence. Ironically, my illness actually strengthened our relationship instead of destroying it. In the face of crisis, our brand-new flirty romance had transformed overnight into an iron-clad confidence. So when my parents dropped me off back at school, I made them do the whole awkward say-hi-to-the-new-boyfriend thing. My parents were not enthused about my choice to continue dating while dealing with my sickness. But they remained civil and kind, and I finally introduced Josh to the people who had raised me.

After my parents left, fatigue quickly hit and I retired to my dorm room. After I spent some time curled up in my bed, a few girls whom I had grown to love dearly came to hug me and to say hello. I updated them on all my crazy medical adventures, and then I shared my frustration at not finding any answers. I felt a huge relief to finally be able to talk through my struggles with my peers. (Don't get me wrong... my parents are awesome. But they also aren't exactly the most emotional human beings in the world.) My friends' overwhelming love and support blessed me so much. Since my health was still so uncertain and they could tell I was struggling emotionally, my friends arranged to take turns sleeping in my room every night. I didn't want to accept their help, but they insisted. And I found that it actually was a huge comfort to have someone else in my room with me during those sleepless nights of uncertainty.

Within the next day or two, I quickly realized that I could not handle eating in the school dining hall. The noise of all the students and professors chattering at their tables invariably sent me spiraling into a chain of seizures. So instead, my sweet friends worked out a system to deliver meals to my room. My boyfriend packed my meals each day, wrote a cute note inside the Styrofoam box, and then passed it to a girl who could carry it to my room (boys weren't allowed near the girls' dorms). If I was sleeping, the girl slipped into my room, placed the food in my fridge, and quietly slipped out again. And if I was awake, the girl would usually stay just long enough to give me a hug and whisper a prayer before heading out to catch her next class.

I ventured out of my room only to attend class and chapel. I was too weak and shaky to carry my own backpack to class, so my boyfriend shouldered both his bag and mine. And although I previously had been a front-row-only kind of student, I now sat in the back so that my seizures wouldn't distract my classmates. One of my girl friends always sat next to me so that I could lean my head on her shoulder during any seizures that came (my boyfriend sat on my other side, but leaning on his shoulder constituted against-the-rules PDA). And I always crawled straight back into bed to rest between classes and then again after my classes were done for the day.

Fatigue became my worst enemy during that time. I survived only by taking at least four or five naps every day. And even when I was awake, I limited my movements so I could conserve every possible ounce of energy. Every waking moment, I struggled to stay present in my surroundings and to ignore my body screaming at me to crawl back into bed.

I found that I was able to do homework in the evenings as long as I stayed in my bed instead of sitting at my desk. However, I quickly grew frustrated because I had fallen so far behind in my classes. But one of my friends was a freshman who shared almost all of my classes, so she quickly became my study buddy. Day after day, she knocked on my door and then we laughed and cried and munched on snacks as we dealt with the homework monster. Having another person to study with gave me the strength I needed in order to fight my fatigue and to stay awake long enough to make a bit of progress in my classes each day.

There still remained more homework than I could finish before the end of the semester. So it was a huge relief when the academic dean called me into her office and offered me an "incomplete" grade in all of my classes. This meant that I could finish all my missed homework and exams over Christmas break. The dean also dismissed all of my absences from my time at home so that my grades would not be penalized. I will forever be thankful for the grace and kindness that the dean showed me that day. Without her help, I probably would have failed most of my classes.

I still had to visit each of my professors' offices to obtain their signatures on my incomplete forms. Since I had a full load of classes, I had seven professors. I hated the thought of explaining my utter failure and asking for grace seven different times. But I spread my meetings out over a few days, and eventually spoke with each professor. The dean had contacted them first, which helped tremendously. All my professors were kind to me and gave me the extensions that I needed.

But one professor didn't just want to hear about my homework. He assured me that of course he would help me get a good grade in his class. But then he asked, "How are you doing? What you're dealing with sounds really hard. Can I pray for you?" This professor's kindness touched me so much that I broke down crying right there in his office. He then listened patiently for the next thirty minutes or so as I vented about the devastating effects of my illness and how much I hated the uncertainty of not having answers. Before I left my professor's office, he prayed for me. I will never forget the kindness that my professor showed me that day. I honestly don't know if he remembers our meeting or not, but his encouragement that day made a huge difference in my life.

Other classmates encouraged me in little ways as well. My favorite was when a sweet group of girls burst into my room one day with a get-well-soon card, a huge bag of Reese's peanut butter cups, and a cuddly stuffed cow. I quickly devoured the candy, but I still have that big fat stuffed cow sitting on my bed next to me even as I write this blog post.

__________________________

This blog post has held mixed feelings for me. I'm honestly quite stressed this week because midterm exams are imminent, and so I did consider ignoring my blog for a week. But I am so glad that I took the time to write this blog post today (okay, let's be real; it actually took a few days), because these memories of kindness have blessed me all over again. I have absolutely loved revisiting these special moments in my life when people showed kindness to me even though I felt utterly broken and worthless. I have always been and always will be a feisty girl with an independent spirit who absolutely hates accepting help. But two years ago, when my life was falling apart and I had no other choice, I was blessed beyond belief by the help that I received. I honestly wouldn't have been able to survive that portion of my life without the patient love and support of my friends.

Today, if you are reading my story, I have a challenge for you: Don't stay silent. People are hurting all around you. I beg you, take the time to find these people and encourage them this week. Some people struggle with physical issues like I do, while others are battling a whole different brand of demons. But maybe, just maybe, your encouragement could help ease their struggle a little bit. Just say hi and tell them you care. (Too shy? Write them an anonymous letter!) If you can, ask them what they need and then offer your help. It might be as simple as giving them a hug. Or, it might be as big as picking up groceries for them and then babysitting their kids for the day. Maybe you could even buy them a big fat stuffed cow. Whatever they need, do it. I promise you, one simple act of kindness can make a whole world of difference to someone whose life is falling apart at the seams.
__________________________

Continue reading my diagnosis story here:
Dear Doctors, Please Stop Telling Me I'm Pregnant: My POTS Diagnosis Story, Part Five
My Symptoms are More than Just Mental Illness: My POTS Diagnosis Story, Part Six
Finally, An Answer: My POTS Diagnosis Story, Part Seven

Stay strong this week. Midterms will be over soon. I'm praying for you!

Bonjé Gioja

P.S. What's one of the best ways someone has ever encouraged you? Do you have any suggestions for me when I want to encourage others but also struggle with my own fatigue at the same time? I'd love to hear your thoughts in the comments below.

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