My Story

January 7, 2019

 

 

Ten years ago, I woke up with a headache. My parents assumed it was my first migraine or the beginning of a head cold. A week later, I was diagnosed with Type One Diabetes and Hypothyroidism. It seemed that insulin and a nightly pill would fix all of my problems. Unfortunately, ten years later, I have yet to experience a single moment without blinding pain.

 

For a long time, there wasn’t a name for it. My headaches aren’t chronic, because they simply never go away. Chronic migraines are defined as a headache that you experience at least fifteen days per month. I no longer remember what it’s like to be pain free. I have been on hundreds of medications, seen countless doctors, tried experimental (and painful) procedures, and told my story thousands of times. No acupuncture, physical therapy, or witch doctor voodoo (yes, my aura has been cleansed) has helped. I have been admitted to the Diamond Headache Clinic twice for more than a week each time, and the doctors and nurses were amazed at the medicines that didn’t work and the headache that wouldn’t quit. Finally, I was given a diagnosis. New Daily Persistent Headache is defined as a headache that has occurred daily, persistently, for at least three months. There is a name, but there is no cure.

 

The past decade has been filled with the horrors of a chronic, invisible illness. I have been accused of lying or exaggerating. Those people have not seen the hundreds of hours I’ve spent hunched over a toilet or cowering in bed or praying that I wouldn’t wake up the next day. Last semester, a professor threatened to fail me, refused to grant accommodations, and forced me to consider withdrawing. I can no longer open my email without experiencing​ ​a panic attack, because I have been so poorly treated by the professionals that have been unwilling to understand my suffering. This semester, I decided to drop out of school altogether. I was supposed to graduate with two degrees from the University of Michigan Honors College next year. I was supposed to continue being the flawless student that I have been for the past nineteen years of my life. I am, however, also supposed to be able to sleep through the night or go grocery shopping or hang out with friends without suffering through constant, debilitating pain. This year, I am learning to accept my life and my chronic illness as my reality. What should have happened, what I thought should lie in my future, is not what will happen. That simple truth is nearly as painful as waking up in the morning.​​

 

On Christmas morning, I woke up the house. It was not with festive excitement, but with my fifth seizure due to low blood sugar since first being diagnosed. I am told that it is as horrifying as you can imagine, and my thirteen-year-old brother has had to help my mom administer the emergency medication. My doctors claim it’s nothing short of a miracle that I haven’t suffered brain damage. Yet.

 

Last year, I gained twenty pounds. I was barely eating and I was throwing up nightly, but that wasn’t evident from the photos. After bloodwork was done, I was informed that my thyroid medication was not working, that I was at a life threatening number. Since then, I have teetered between having levels that are too high and too low. With one minor change to my dosage, my body’s hormones are thrown into chaos.

 

The past six months of my life almost destroyed me. I’m convinced that if it weren’t for my dog, who I rescued over the summer and who anticipates my every need, I wouldn’t be writing this today. Living with as many chronic illnesses as I have is exhausting. It makes waking up draining. Carrying a conversation or going on a date leads to a week hiding from the world. It is alienating, trying to explain to friends and family that my main focus for the past ten years has always been not crying, not breaking under the nonstop pain. Some days it feels like no one could even contemplate putting themselves in my shoes, because how can someone be in excruciating pain for an entire decade? Surely, there had to be a second of relief. It’s like telling a person that I have a second head, a second brain with an icepick and a drill and a hammer simultaneously destroying it. Only, that head is invisible, that head doesn’t exist, and it is all—literally—in my head.

 

Now, I’m doing my best to tell my story, to be understanding of those who enjoy lives without fighting a constant battle, and to let myself heal. I know that the day I do receive my degrees, I will be in pain. If I ever get married, I will be in pain. My arthritis will flare up every time it rains or snows, the bottom of my purse will always hold insulin needles, and my immune system will buckle at the first hint of germs. I also know this: my words, my struggles, have power. Because I am suffering through this pain and enduring it, I can motivate others. I can choose to shine as brightly as I can when I can, and to survive the days that are slowly killing me. I am not my pain. I am not the days without sleep or the countless medications I’ve flushed my system with. I am not the cancelled plans or the lost friendships or the moments I’ve spent contemplating if it’s all worth it.​

In the end, I am everything that blossoms in the cracks left behind by an existence of pain. I am a writer and a sister and a daughter. I am a friend and an advocate for those suffering the silence of chronic illness. More than just sick, I am also human.

 

 

 

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© 2018 The Suffering the Silence Community, Inc.