When Your Life Before Chronic Illness Is Like an Ex-Lover

Three years ago, I left work early due to intense back and abdominal pain — the type of pain that makes simply lying down difficult. The emergency room doctors informed me that a bladder infection (which I was unaware of) turned into a severe kidney infection. My kidneys were not working properly, and a strong colony of E. coli decided to make my poor kidneys their home, flushing out blood and dehydrating me in the process.

Three rounds of antibiotics, several urgent care visits and many months later, I was still not better. In fact, I felt worse. I was constantly dizzy, aching, fatigued and nauseous. Every move I made was painful, and every time I sat up, I fell right back down. I went through doctors left and right, all of them saying I was making this up or that I should wait it out, causing me to miss many months of school and prolonging my pain.

Fast-forward to May 2013 when a fabulous doctor at Mayo Clinic diagnosed me with postural orthostatic tachycardia syndrome (POTS). He explained that I developed this autonomic nervous system condition because my body went into shock from the kidney infection about nine months ago. POTS is a chronic condition that causes an array of symptoms that can include: reduced brain blood flow, lightheadedness, fainting, migraines, nausea, gastrointestinal issues, blood pooling in the limbs, tachycardia, chest pain, shortness of breath, fatigue, low blood volume, muscle weakness and pain, along with several others.

This happens to far too many people; too many students lose out on education, too many parents miss their children and too many individuals are told that POTS is “all in their head.” POTS has taken far more than my energy: I missed the last (and arguably the best) two years of high school, my relationship with my friends and boyfriend suffered, my near-perfect GPA took a hit, I wasn’t allowed to work and I was a stranger to so many teenage experiences I will never get to redo.

I mourn my pre-POTS life. Life with a chronic disability is restrictive for me. I long for the days when I didn’t have to pop pills in class, when I had enough strength to walk up a few flights of stairs, when an aching wrist was fixed simply by resting my hand for a few minutes rather than a constant reminder that I’m not OK.

But POTS has also done many great things for my life. When everything is taken away from you, you learn to appreciate what you have. A common trope is that a man realizes how amazing his ex was after she’s in the airport, waiting to board a flight that’ll take her to a man who will treat her right. My pre-POTS life is that runaway ex-lover. Of course I want it back, but it’s not possible. It needed to leave so I could grow — so I could realize that the people who will stick with me forever won’t throw a tantrum when I say “I’m sick” for the 1,000th time, that burning the candle at both ends won’t help me in the end, that understanding limitations for both myself and others is a necessity for any relationship and that taking care of my body physically, mentally and emotionally remains the top priority in life.

I have grown so much over the past three years, and while I wish I could have grown on my own and not because a tribe of bacteria decided to immigrate to my vital organs, I am grateful for the good POTS has done for me. Life with a disability is difficult for me, but choosing to see the opportunities it provides for us instead of only the limitations is what helps us overcome it.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.