Health is like money. We take it for granted unless we don’t have it. But what if your health has always been poor? What if you’ve gone from doctor to doctor searching for answers that simply don’t exist yet?
When Jessie Franke of Omaha, Neb., wrote in describing her lifelong battle against poor health, I was reminded that there is still so much in medicine we don’t know. We expect our doctors to have all the answers-but the truth is they have very few. Jessie has five different conditions and illnesses. She’s had a tough life, but in the end she’s one of the lucky ones: She got five answers. How many others are out there suffering because of our lack of knowledge?
One of Jessie’s symptoms was weight gain. Illness can drastically change the way you look (check out today’s Well blog in the New York Times for an essay about When Cancer Changes Your Appearance ).
If your appearance has been altered by ill health, write to me at email@example.com . Now over to Jessie.
I’ve been chronically ill my entire life. When I was little, no one knew what was wrong with me. I was moody, socially awkward, and suffered from constant stomach aches, fatigue, and generalized pain. I was just considered merely “high-strung” because I was “so smart.” Ah, ignorance is bliss.
My depression worsened in high school. At that point, I attributed my misery to my supernatural ability to see the world as it really was-an awful place. Once other symptoms set in, like weight gain (the worst thing ever for a teenage girl), a doctor gave me my first correct diagnosis: Hashimoto’s hypothyroidism (a type of autoimmune disease that destroys the thyroid gland.) I was 15.
Despite lifelong symptoms, I still mark that day as the beginning of my illness. My self-conception changed forever. I was told that simply taking a pill every day for the rest of my life would “fix me,” but it didn’t. The clichéd consolation, “At least you’ve got your health,” became a cruel joke that didn’t apply to me.
My health declined throughout the rest of high school and college. I quit the tennis team, took a reduced schedule, threw up blood in the middle of an exam, and endured countless painful and terrifying tests to find out the cause of my stomach aches. I was still academically successful, so my family and friends assumed I was actually fine, while doctors declared I was making it all up to get attention.
My illnesses were invisible, my symptoms relatively minor, meaning my complaints could be carelessly discounted. Sometimes I wished for a common, acute, life-threatening, easy-to-diagnose, visible illness so I could get some damn sympathy for once. Even the very visible fact that I was bloated and overweight due to side effects of failed drugs, from antidepressants to muscle relaxants for pain, was attributed by doctors to overeating and lack of exercise.
After college, I dropped out of biology graduate school in the middle of my first year. I was 22. I’d been attending my classes, struggling through my rotations, and trying my best, but it wasn’t good enough. My endlessly patient but bewildered husband would feed and change me into my pajamas at the end of every day while I sobbed in pain and exhaustion. (Incidentally, my husband, whom I’d met in college and married right after, discovered he had such a knack for caring for people that he’s gone back to school to become a nurse.) I tried to convince myself that I wanted to quit, not that I had to, but it wasn’t true. The illness had finally won. It was the first time I’d ever quit anything in my life, and I felt like a failure with a ruined life.
We moved into my parents’ basement, not knowing if I’d ever recover. I couldn’t get up the stairs more than once a day and slept most of the time. Every movement, every touch, was excruciating, and I spent most of my lonely waking hours contemplating suicide.
But finally, I found doctors who believed me and started trying to help. A rheumatologist diagnosed fibromyalgia (a disorder in which overactive nerves cause widespread pain and fatigue) and sent me to physical therapy in a warm water pool, where I drew confused glances from the other (geriatric) patients. After each hour session, it felt like I’d run two marathons, even though all I’d done was move my arms and legs in circles through the water. However, gradually my strength and range of motion returned.
A psychiatrist diagnosed bipolar disorder, which explained why antidepressants had never helped (and also explained my occasional bouts of frenzied activity and unbridled enthusiasm). An anti-epileptic drug regulated my moods and alleviated most of my remaining pain. Dialectical behavior therapy (DBT) curbed my suicidal feelings and ameliorated my finally-diagnosed Asperger’s syndrome. Within months I was working in a lab again, although I often couldn’t manage a full 40 hours a week and felt guilty when I had to slink out early. My husband and I bought a house and made friends. I dieted, and was now able to walk or ride a bike for an hour and a half a day. On the day the scale said I’d lost the 50th pound, I pronounced myself cured (willfully ignoring the fact that you can’t cure chronic illnesses, you just manage them). I was 25.
Eventually I decided to search for a career that my post-illness self would enjoy. I considered everything, even becoming a pastry chef. As I practiced baking every day, my stomach aches got worse, and the last piece of the puzzle fell into place. After my 27 years of abdominal anguish, with false diagnoses ranging from heartburn to IBS to pancreatic cancer, I found out that all along I’d had celiac disease (an autoimmune condition that attacks the lining of the small intestine). Yes, I could have saved myself all those stomachaches by not eating bread. By the time I discovered the celiac disease, I was already managing bipolar, Asperger’s, fibromyalgia, and Hashimoto’s. To treat the celiac I made a simple (well, not so simple) diet change to avoid all gluten, and felt so much better. I was completely pain-free for the first time in my life. My maintenance treatment became a matter of taking an anti-epileptic drug and a thyroid replacement hormone, being really proficient at DBT skills, and not eating gluten.
But I had no idea what to do next.
I’ve always been very ambitious. Yet being so sick for so long has changed my priorities, my options, and my abilities. I don’t want my most amazing life accomplishment to be that I got better. Most “survivors” become advocates for their illnesses to create meaning, which could be a great idea because my conditions are either only very recently defined or still poorly understood. But which condition do I choose? For now, I write product descriptions from home for an online retailer, which I’m good at and enjoy, but don’t necessarily find existentially fulfilling.
So I got pregnant. Amazingly, I’m having a normal pregnancy. My doctor wasn’t planning on doing an ultrasound until 20 weeks, but I begged and got one at 10 weeks. A recognizable baby danced onto the screen and the technician said, “Everything looks perfect. What were you so worried about?” I wept.
Sometime in October, I will give birth to my triumph over adversity in the most tangible way possible. I’ll be 28. However, I don’t want my son to be a mere symbol of my success. He should be his own person, free to make his own choices and mistakes, without being burdened by the task of redeeming my failures.
At some point, Mommy needs to find her own life, but for the time being it will be refreshing just to have the ability to care for someone else instead of the other way around. While I also don’t want my most amazing life accomplishment to be having a child, I think that creating a new human may be awesome enough for right now.
Jessica Franke lives in Omaha with her husband, two dogs, two cats, and expanding pregnant belly. Her baby boy is due in October.