How Being Diagnosed With Three Major Illnesses At 26 Cured My Hypochondria
When I was four, my mom tells me I enjoyed wrapping my legs in Ace bandages and pretending they were broken. I vaguely remember enjoying the feeling of sitting one out at playtime, laying listlessly on the couch with my legs propped up on a pillow.
Twenty-or-so years later, I still love that feeling I faked as a kid — because a physical ailment allows a level of permissible withdrawal from the world that nothing else does. And for a highly sensitive child like me, the world felt unruly, loud and overwhelming.
But my hypochondria has also cost me a ton, from the missed opportunities to dorm at college for fear of STIs on public toilets and foot fungus in communal showers, to actual medical bills. I have never been one to pass up a chance to see my internist, and every time a relative got sick with something that runs in families — cancer, heart disease, what have you — I ran to her office and demanded tests.
All of that changed two years ago when I started feeling real symptoms. Overwhelming, debilitating vertigo for several months had me missing days of work at my fast-paced nonprofit job, and when I made it there, running to the bathroom to hurl in between meetings. I would have episodes of blurred vision, and complain to my mom over the phone that I just couldn’t see as well.
And then a third symptom: white-hot, searing joint pain in my low back. One morning it got so bad that I couldn’t move my legs at all to get out of bed, and my sister had to slowly lift me up, inch by inch, over the course of 20 minutes as I sobbed uncontrollably. I saw all kinds of specialists, was deemed healthy to my complete and utter befuddlement, and given muscle relaxers, anti-anxiety pills, and migraine meds. The side effects were horrible — they plastered over my symptoms and made me feel woozy and drugged.
After nine months of this, which in retrospect I recognize as ageism from doctors and intimations that my symptoms were psychosomatic, I was at the brink of physical agony. I almost gave up. Then I heard this voicemail message from my doctor at 5:30 p.m. on a Friday: “Diana, give me a call as soon as you can to discuss your MRI results. We found something and we need to discuss what can be done. Give me a call.”
Her office was already closed for the weekend. I was sure I had a brain tumor and didn’t sleep a wink for two days.
On Monday morning, I got the first of three diagnoses, my salvation, because they brought the treatment I was in dire need of: A rare congenital defect was found in the left parietal lobe of my brain, the area that controls language and speech. Soon after, I was told a neurological disease that causes blindness if not treated promptly had already begun to destroy my vision, and an autoimmune disease that can cause paralysis in late stages was tearing my spinal joints to shreds.
All serious, potentially life-threatening or disabling conditions. It took dozens of doctor’s visits to parse out each of them, as they were all colliding and muddying up my symptom picture.
Several brain surgeries and hospitalizations followed, as did a year out of work and countless postoperative trips to the emergency room for headaches and pain. My brain lesion could bleed “any day of the week, totally unprovoked,” as my surgeon so artfully put it, and so began my journey to reconcile living with the possibility of a stroke or imminent death.
I was given radiation to cut off blood flow to the lesion, which entailed a metal frame being screwed directly into my skull where it hung for 9 hours as I was put through MRI after MRI and then enclosed in the coffin-like radiation machine — but it takes three years to work, so I sit here today with the little bugger still in my brain.
Barely having digested that experience, I was hard at work learning to inject myself with disease-modifying meds, which cost my insurance company more than I earn in a calendar year, to halt my autoimmune disease.
My brain conditions targeted the things I cared about most — my ability to speak, write, and see. A certain percentage of patients are rendered unable to speak or process language after the radiation surgery I had, but without it, I would live the rest of my life with the risk of dying from a brain bleed. I had to take the risk of losing the skill that made me who I am as a person, and a writer.
And the autoimmune disease I have debilitates people every day. I was tremendously fortunate to not only survive, but also survive without disability. I healed well. My brain lesion is shrinking, which is what we want. I have minimal vision loss, though enough to frustrate me on some days. I am lucky that my immune-suppressing medication is working for me, my joint pain has lessened, and I’m able to walk normally again. Even if this drug has been linked to lymphoma.
Some days, I feel it’s a wonder I haven’t been sent to a psych ward — pre-diagnoses, I thought for sure I’d have a nervous breakdown if my suspicions of illness were ever correct. But perhaps the biggest shock has been this: My inner hypochondriac is now, for the most part, at peace. With very real physical maladies to contend with, I have completely stopped cooking up worst-case scenarios. Maybe it’s the human equivalent of throwing a dog a bone; now that I’m being kept busy, I’m no longer looking for trouble. Maybe it’s knowing I need to make the most of my good days. Or maybe it’s because the worst happened and I’m still standing.
After the countless 5 a.m. blood draws, spinal taps, contracting a severe intestinal infection during one of my hospital stays, four surgeries, copious vomiting, five days in the neuro-intensive care unit, and painful biweekly shots, my body bounced back. Rose above. Recovered. You’d look at me and never know I was sick, unless you lifted up my shirt to see the few jagged scars on my torso, or felt around my scalp where a tube now sits to drain my cerebrospinal fluid, which keeps my vision intact.
I recognize I could have been destroyed by these experiences, but quite the opposite happened: My body awed me with its seemingly boundless strength and resilience. Every time I thought I’d blown through all my physical or emotional reserves, I was able to find more. And much to my surprise, I never lost my mind to despair. Even in unimaginable darkness, my instinct, unyieldingly, was to lean toward the light.
That’s not to say my old psychoses don’t creep up on me every now and then. But on bad days, when my body acts up, I approach it the way you would a wailing toddler: Calmly ask what the problem is and offer help if I’m able, all the while refusing to make a fuss. This didn’t happen right away of course; early on, I ran to the emergency room with every headache and imagined the worst side effects of my medications (cancer, life-threatening infections, sudden death). But quickly, I realized that my hypochondria must be kept in check from this point on — because if indulged, it stops me from living in the world, and I’ve lived confined to a bed for too many days.
Anyone with chronic disease will tell you this: After the moment of diagnosis, it becomes unmistakably clear that an obsessive focus on your symptoms will upend and ruin your life faster than your disease(s). I knew I had to learn to stop having meltdowns at the slightest twinge or pain, and that knowledge was ultimately my cure. There’s only room for what’s real now.
It also helps that I’m easily able to shake off worry about virtually anything — my dwindling bank account from exorbitant medical bills, my next career move, an especially fatigued week — by remembering that someone couldn’t get out of bed today. A year ago, it was me. And as far as I’m concerned, being back in that spot is the only thing I have left to fear.
This piece originally appeared on xoJane.
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