Heidi’s health challenges began when she was very young and only compounded in her teenage years and early adulthood. Today, she continues to manage multiple physical and mental conditions — some with effective treatments and others through guesswork and specialist appointments. This is her perspective on the arduous journey, informed by the dry humor and wisdom she’s developed along the way.
Adversity at an Early Age
I’ve had environmental allergies and asthma since I was a little girl, and that combo led to a lot of respiratory infections and trouble breathing. At age 14, I developed generalized anxiety disorder and severe depression. I couldn’t eat. Even when I could sleep, I would wake up silently screaming because of horrible nightmares, and I just felt low.
My mom insisted that I see a psychologist. Despite my resistance to the idea of medication, when therapy didn’t help as much as it should’ve, at age 15 I started seeing a psychiatrist and she put me on Wellbutrin. All was well… until around age 18-20, when I started sliding into a hell of migraines and cramps that encompassed most of the month, and bipolar 2 disorder instead of just depression.
By age 21, I was a complete mess; I couldn’t function either physically or psychologically, which got my suicidal self kicked out of a prestigious university. I vividly remember going to a GYN about my horrendous menstrual cycles and telling her, “Make. It. Gone.” Long story short, it took [several years] to fully get the bipolar disorder under control, and the migraines only got worse. Periods were still hell, but a low-estrogen pill shortened them and meant that ovulation was no longer a thing, so that was an improvement.
My life improved. I graduated community college and started at a university. But then I became an obese, constipated slug in 2011, and in April of that year was diagnosed with hypothyroidism. I met the love of my life in July 2011, and the diagnoses continued to pile up as we dated, married in 2013, and built a life together.
I couldn’t seem to stop peeing and was diagnosed with overactive bladder. My migraines became chronic. Then I found myself in incredible pelvic pain. Five agonizing months later, my awesome GYN’s hunch that I had endometriosis was confirmed with laparoscopic surgery. She and my urogynecologist did a test and it turns out that I have interstitial cystitis, not just overactive bladder.
Then my mental health took a turn for the worse again. I begged and pleaded with my psychiatrist to help me figure out why I had, as I thought of them, all kinds of annoying “demons” in my brain. As it turned out, I had developed OCD; one good prescription and a lot of coping skills later, I can handle it most of the time.
A year later, the endometriosis returned and my GYN referred me to a specialist… it just never ended! That’s basically been the story of my adult life, and if I had to sum it up, it would basically be “rushing from one medical fire to another.” I haven’t even touched on a diagnosis or two!
Managing Multiple Conditions as an Adult
There are always the lovely games of “Symptom or Side Effect?” “New Disease or New Symptom?” “Which Organ Is This Even Related To?” Also, if my hospital stays are any indication, I am the only one who can be trusted to make sure that I get all the right medications at the proper dosages at the proper times.
My husband has a chronic illness himself, and he is my biggest supporter and comforter. He basically takes care of the logistics of life and merely requests that I interact with him in the evenings, if I’m able. He’s incredibly patient with my befogged brain, and will talk through every doctor visit and test result with me to make sure he understands what’s going on.
Despite his worries, despite the inconvenience, he’s stuck with me through the endlessly accumulating and worsening diagnoses, and always makes sure to bring up any issues he has with how our relationship is working before they can fester. We then talk them to death and become closer for it. I don’t know what I would do without him!
I also have amazing, supportive friends and family who have helped me through some of the worst of it. It also helps to be able to do something as simple as feed the birds in my backyard.
Priorities for care are simple: 1) What’s affecting me most right now? 2) What has gone the longest without being addressed? 3) What am I due to follow up on? For example, right now I’m deep down a diagnostic rabbit hole trying to figure out why I seem to need 12-15 hours of sleep a day to feel human. My bowels are being weird again, and I’m having pelvic pain from I-can’t-always-tell-which organ?
Meanwhile, I had my headache specialist, cardiologist, and PCP team [try] to find me a drug that will take away my heart palpitations, slow my heart rate, and help prevent migraines, all without making me feel faint. That got filed under “important and neglected for too long,” so I made some noise and kept making calls until I got everybody on the same page.
I have a telemedicine appointment with my headache specialist soon, but that falls under “due to follow up.” When I neglect those, big problems start happening.
Lessons Learned
1) Always have a VERY detailed medication list on your person. This list should include the name of the medication, the dosage, how and how often (e.g. 2x/day, daily with a meal, as needed, etc.) you take it, what it’s for and the last name of the prescribing doctor. Excel spreadsheets are your friend here, and the medical staff taking care of you will thank you!
2) Find your rock, or better yet rocks, plural. Have people whom you can turn to for unconditional love and support, and best of all logistical help if you need it, without worrying that you’ll push them away by being a Debbie Downer. Just knowing that you’ll always have a listening ear when you need one is an amazing feeling.
3) Learn to laugh at the absurdity of your life and see the good in the little things. If you don’t laugh at how crazy your body and/or mind are, you’ll cry, and nobody likes crying, so find the humor in it and laugh instead! See the tiny pieces of good in every day: you got out of the house for something other than a doctor appointment or placed first on the leaderboard in that video game you love or got to spend time with someone you love.
No matter what your depressed jerk of a brain is telling you, no matter what your pained, exhausted body is screaming at you, you’ve survived every day so far and you can survive every day that’s coming at you.
I’m not going to give you any horrible platitudes about what doesn’t kill you makes you stronger, but you will find depths of strength you never knew you had. Feel free to meditate, or pray, or just plain scream into the void, but atheist or devout believer, you WILL find strength to keep on truckin’.
Heidi D.
Highland Park, NJ
Lives with bipolar 2 disorder, generalized anxiety disorder, obsessive compulsive disorder, chronic migraines, environmental allergies, asthma, hypothyroidism, gastroparesis, endometriosis, interstitial cystitis, chronic constipation
If you or someone you know is struggling with mental health issues and considering suicide, please call the National Suicide Hotline at 800-273-8255.
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