MEET BETHANY: The Pain was Real

 

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MEET BETHANY WILSON: after being diagnosed with a rare illness in high school, she found her faith tested, learned to trust herself, and came to know the Lord in a way she never had before. 

 

How were you diagnosed with POTS? 

My journey began the summer of my sophomore year of high school. I was having stomach pains after I ate anything. After many tests, it was found that my gallbladder was functioning at only 8%. So, two days after, I got my gallbladder removed and life began to go back to how it was.

At the beginning of my junior year, my graphic design teacher (who was also the school’s cross country coach) encouraged me to join the cross country team. Although my parents were skeptical that I would be rushing into strenuous exercise too quickly after my surgery, they saw how important it was to me and gave me their OK. Practice was very difficult— but I attributed it to my lack of ever previously doing a professional sport. I kept on, and then came our first meet of the season. I was so excited! However, a few minutes in and my head began to feel light. I was told time after time: mind over matter. I kept going, until I couldn’t anymore. I passed out. Once I came to, I stood up and began to walk back (I was closer to the starting line than I was to the finish). We all figured I was just dehydrated— until it happened again at our next meet.

Something was wrong. But it wasn’t at the top of my list of worries. Maybe cross country just wasn’t my thing.

So I quit the team. Life resumed back to normal until one night soon after. I had just been out with my best friend for lunch. My chest started hurting. My stomach was aching. My head was throbbing. I remember thinking it might be food poisoning. Something felt off, though. I didn’t go to school for the entirety of that next week. I was in severe pain. My parents took me to my doctor, who ran bloodwork which came back perfect. He refused to write me any more excuses for missing school because he thought I was being bullied and was simply trying to avoid it. I was approaching my maximum number of absences at school, so I had to file a waiver because I genuinely could not get out of bed except to go to doctor’s appointments. The waiver was approved, and I tried to keep up with my schoolwork at home. After a couple weeks, it was clear that even that was impossible to do. So my parents and I made the decision for me to be homeschooled for the rest of the semester. My time was then dedicated to figuring out what was wrong with me. We went to specialist after specialist trying to find answers. Doctor after doctor, test after test, scan after scan all seemed to reveal the same thing: I was perfectly healthy. But I wasn’t. I was by then sleeping most of the day and staying up all night in intense pain. I often felt like I was sincerely going to die.

One day, we went to a neurologist in our area. This was the first time the idea of POTS was brought to our attention. He told us that this disorder had been discovered fairly recently. Not many people, or even doctors, were even aware that it existed. It is incredibly difficult to diagnose because it doesn’t show up in blood tests. It doesn’t show up on scans. It doesn’t show up anywhere on the body. The only way to diagnose POTS is to perform a tilt table test, which is often very traumatizing to the patient because it makes symptoms much worse. He was honest with us and said that he did not possess the knowledge or equipment to officially diagnose me, but that he would be more than happy to refer me to someone who did. So off we went to the best cardiologist in the state.

This doctor asked me about my symptoms and performed a much smaller and less intense version of the tilt table test. He determined that I did in fact have a severe case of POTS. Thus introduced us to the endless number of medications. Because POTS was so new, there was no pill specifically made for POTS. Also, different patients responded differently to every pill. So we were kind of shooting in the dark as far as what to start off with. Long story short, I tried LOTS of different medications. Many of which did not seem to phase my symptoms. My biggest problem with these medications was their side effects. One kind made my hair fall out in clumps. Another made my back hurt intensely (that one was a side effect that had never been reported by patients who took it, but my doctor told me that it was in fact a side effect!). It was hard suffering so much. Many medications took weeks or months to get into the body’s system to see if they would even help. It was agonizing. But we eventually came across a teeny white pill that helped my symptoms SO MUCH!! Its only side effects on me were nightmares and an itchy nose.

 

 

What did it feel like to be diagnosed with a rare illness at such a young age?

 

Being diagnosed with POTS was extremely difficult for me. Junior year was what everyone kept telling me the most important year of high school. I felt so left out. But my biggest struggle with this illness was the fact that it’s an invisible illness. Other than my tired eyes, no one would be able to tell that I was sick. Many people began to doubt my symptoms as weeks and months went on without doctors finding any clear answers. My symptoms were only noticeable to myself. Often doctors would give up on trying to figure out what was wrong because all my tests came back clear and tell me that my pain was not real. I felt absolutely defeated every day, and I thought that no one would ever take my pain seriously. I even started questioning my own symptoms.

Once I was diagnosed, though, was probably the best feeling of my entire journey. My symptoms had a name. My pain was real. I was finally able to look my illness in the eyes and fight it, knowing exactly what it was and what it was doing to my body.

 

 

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What are some ways people encouraged you during this difficult time in your life?

 

My parents were (and continue to be) the kindest and most selfless people in my sickness. I think back at how their every thought was consumed with finding relief for me. I was usually never hungry or in the mood to eat, but my dad knew that I would never say no to my favorite local restaurant, Come Back Shack. Whenever I wasn’t eating a lot or felt particularly bad, he would drive up to Come Back Shack and get my favorite order: a chicken sandwich with no veggies, seasoned fries, and a cookies and cream milkshake. When he brought it back to me and saw me eating, his face lit up like a sunbeam.

My mom would always take care of me. If I was having a bad night, she would stay up with me and rub my back until I fell asleep. She’d get me medicine, wet washcloths, heating pads, and anything else she thought would ease my pain even the least bit.

Although I had many doctors who either didn’t believe me or refused to help me, there were a few that really encouraged me during the midst of my sickness. These doctors poured their compassion into me. One doctor in particular, Dr. Aubuchon, had little knowledge about my illness but researched intently so he would be able to help me to the best of his ability. It was doctors like him who truly made me feel as though I had a team of support.

 

 

What do you wish everyone knew about living with a rare illness?

 

I wish everyone knew that invisible illnesses are just as real as those with visible symptoms.

 

 

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What advice do you have for someone living with or loving someone with a rare illness?

 

To someone living with an invisible illness: Never question your pain. Never settle until you find answers for your pain. There is a healthcare professional somewhere who cares about your wellbeing and will help you understand what’s going on. Never think that just because your symptoms aren’t visible that they aren’t there.

To someone whose loved one has an invisible illness: Be a light to them. Invisible illnesses are so scary to experience. Make sure they know that they have your love and support through it all. Help them understand that you know and believe that what they are going through is real.

 

 

And just a little more I wanted to add in about what God has done for me through this hardship:

 

At this point in my life, I was unaware of the fact that I could have a personal relationship with God. I was a Christian, but my faith was always associated with my parents. I never really prayed alone or studied my Bible without my family. But I remember one night, around the peak of my illness, God really showed up in ways that I had never seen before. It was around 2am. I had just gotten through a really bad episode. My parents had gone to bed, and I was laying in my own bed. My cheeks were stained with tears. Loneliness and defeat filled my heart. But suddenly a wave of comfort and peace engulfed around me like a big warm hug, and I immediately felt God telling me that He was there. That He had never and would never let me go through anything alone. That was the first time that I realized my relationship with God could be so much more intimate than just hearing my dad talk to our family about the Bible every morning, or listening to my mom pray over us every night. So even though this was one of the hardest things I’ve had to go through, I needed it in order to fully understand the extent of the Lord’s goodness and mercy for the first time.

 

 

CONNECT WITH BETHANY: 

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