My Body Betrayed Me
As I lay on a cold, sterile table with an unflattering pink gown tied haphazardly around my chest, I thought about how I got to this moment: being scanned by an x-ray machine to see how much bone damage my disease had caused.
It first started with kidney stones and infections in the fall of 2016. They were severe, random, and extremely painful. I dealt with the chaos of hospitals, took my pain medicine, and waited for relief.
Fast forward a few months later, and the sleeping problems started…insomnia. I tried everything. Chamomile tea and hot milk. Warm baths. Peanut Butter. No screens past 10 pm unless for work. Lavender essential oil. Melatonin. CBD Oil. Xanax. Nothing worked. Sleepless night after sleepless night ensued. I begged to succumb to my fatigue, each day foggier than the next, plagued with dark circles under my eyes and a lack of clarity.
Then more symptoms appeared: body aches, memory loss, excessive thirst, severe headaches, hot flashes, night sweats, loss of appetite somehow with weight gain, constipation and abdominal pain, extreme fatigue, weakness, depression, and a total lack of energy. I have passed out in too many public places and my coordination has been off likely due to lack of sleep (causing some embarrassing tumbles like last week in my shower when I hit my head and neck). I am in pain all of the time. I can’t sleep. And my body doesn’t feel like my own.
After seeing countless doctors who either dismissed my pain or said it was all in my head, I found a physician who listened to me. She took my pain seriously and she ran a series of thorough tests. Mind you, I only found her in the fall of 2017 so I had been running all over the city for almost a year with no answers as to what was wrong with me. After being poked and prodded, I was diagnosed with primary hyperparathyroidism, and hypercalcemia, which also causes a severe vitamin d deficiency.
So, what exactly is primary hyperparathyroidism and hypercalcemia? Humans have 4 parathyroid glands. They are rice sized (baffling how such small glands can cause such havoc) and located on the sides of the thyroid. They are responsible for regulating parathyroid hormone or PTH. Basically, I have abnormal parathyroid glands caused by adenomas (tumors), which causes my body to create 3 times the normal amount of PTH. This hormone then causes excessive amounts of calcium to be present in my blood. There are three ways that hyperparathyroidism can raise calcium levels: it can take calcium from my bones, tell my small intestine to absorb more calcium into my blood stream, or tell my kidneys to hold onto more calcium instead of dispelling it. It is also generally a disorder that women between the ages of 50 and 60 get. So, there’s that. Left untreated extreme levels of calcium can cause renal and heart failure. Scary stuff. My doctor informed me that in their circle they call this the disease of the bones, stones, groans, and psychic overtones, because the symptoms of this can be varied but are usually separated into those categories.
Googling is insanely stressful and terrifying. I typically feel in control when I have as much knowledge about a situation as I can, so naturally I wanted to find out everything I could about my diagnosis. If you research my disease, it will say: hyperparathyroidism will not kill you today or tomorrow, but if untreated it will kill you in 20 years. Flash forward to 46-year-old me and I still have a lot of living to do. It appears nuance and subtlety were lost on the Harvard researchers who wrote the article in the medical journal. Needless to say, this did not assuage my fears.
Since my illness was caught now, instead of years later there are things we can do to combat my disorder. I will be undergoing surgery to remove my parathyroid glands, the exact ones are still to be determined as I am currently waiting for a biopsy of each of the glands to rule out malignant tumors. Surgery is the only cure to primary hyperparathyroidism. Then I will take a series of prescription strength vitamin d supplements and have my blood tested regularly, among other things.
I’m fortunate really. I found out now instead of in the future when it was too late. And I thank my lucky stars I was able to finally find a thorough, patient, and supportive primary care physician who persisted. But being sick is hell. There is no way to sugarcoat it. My life has been on hold for months. I have lost parts of my identity. I feel like my body has betrayed me. However, during this journey I have also learned many lessons as cliché as that may be.
You are more than just your job.
Before I got sick, I was extremely focused on my career, as many young professionals in DC are. I worked along hours, most often prioritizing work above my health. Yet, when I got sick, I could no longer pretend that drinking 3 coffees in the morning was going to keep me going all day if I had only slept a restless 3 hours the night before. It took me longer perhaps to get the help I needed because I didn’t want my career to suffer. I wanted to keep plowing ahead. I measured my worth by my work accomplishments.
It took getting sick and having to leave my job to realize that I am more than my job. And it took having serious conversations with friends, mentors, and family to realize they didn’t love me for my job title. Of course, I will never stop being passionate about politics, or about working to make our society more just and equitable. It is what I dedicate my life to. However, in order to do that, I needed to be healthy. How can I make the world better, if I am hanging on by a thread? Spoiler alert: I couldn’t. Perhaps the best thing I can do for the world now is resting, so when I am back on my feet, I will be able to fight harder than ever.
Being ill helps teach you who your true friends are.
I am surrounded by wonderful, caring human beings. Whether it was my parents inviting me to move back home for months, or my friends who bring me food and come over to my house when I am too tired to leave but desperately want company. I am forever indebted to their kindness. I had support in Milwaukee, Chicago, DC and even from friends traveling all over the country (looking at you N’jameh). It really does take a village, and I am so grateful that my village is vibrant and strong.
I have also learned that there are some people I cannot count on. One person in particular, instead of trying to understand that my disease could cause severe depression, decided to sever all ties with me and accused me of having multiple personality disorder after a complicated misunderstanding. There is a hole in my heart where that person used to be. For him it was easier to cut and run rather than stay and listen. I’ll never understand it because I don’t abandon people when they need me, but sometimes you can be too much for a person. If I have learned anything over the last months, it is to keep moving forward. No matter how impossible each day seems without him in it.
Illness is inherently lonely.
Pain is isolating. Illness is lonely. I am blessed with many people in my life, as I just stated above, yet there are times when I have to be alone. Illness is hard to talk about. It’s hard for people to understand. I grow tired of not being myself. I don’t want to be treated with kid gloves, but I also need empathy and patience. Just as my pain and symptoms can be invisible, I often feel separate from the rest of the world. There is a silent divide keeping me isolated from who I once was.
Sometimes even friends or loved ones can say “get up and ready; get out of bed.” I can’t, I physically cannot do it. All too often, we do not listen to our bodies when they are giving us signs. When you are sick, all you CAN do is listen to your body, even if that means your body is telling you have to cancel those plans. It is not something you want to do. It is something you have to do.
Obamacare is saving my life.
Perhaps it was foreshadowing when I wrote an essay in my White House intern application about how the Affordable Care Act could have saved my grandma’s life had it been law during her terminal illness. Little did I know it would save mine years later.
I am undoubtedly privileged for having been on my parents’ insurance until I was 26, thanks to Obamacare. Unfortunately, my health insurance afterwards was not nearly as extensive. This led to lapses in care due to my inability to afford high co-pays and out of pockets costs. Even worse, after I left my job due to the illness, I was uninsured. I was unable to pay for testing or treatment so I, like millions of other Americans, signed up for health care via the marketplace. Since enrolling, I have had superior health care. I am no longer denied treatment because my insurance does not cover it. I am no longer forced to endure pain rather than seek help when I need it. I am no longer overwhelmed by medical bills because my insurance actually covers the majority of costs.
Obamacare is saving my life plain and simple. It is also saving the lives of millions of other Americans who have chronic and life threatening illnesses. You can talk about its flaws, or even talk about dismantling it. But before you do that, think about me and the other people in your life before simply calling for an overhaul as many Republicans in Congress do so regularly. I will gladly talk about changes to be made to improve and make health care more accessible and affordable, but I will never agree to gutting the ACA. Health care is a fundamental human right.
It is vital to advocate for yourself.
As I touched on before, there was a long period of time before I was diagnosed. I grew weary of appointments with no solutions and being told that I was experiencing pain due to anxiety or depression. Our society is very unsympathetic to young people, particularly young women with health problems. *(As an aside, Michele Lent Hirsch just wrote a book entitled Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine that deftly deals with this topic if you are interested in this research. There is even more research on how people of color experience even greater biases in our health system that lead to negligence in care.)
Many patients suffer due to that lack of sympathy, whether it is from doctors, from employers or coworkers, or even from individuals in their social and dating circles. I saw doctors who did not believe me. I had people in my life who belittled my pain. I have lost friends over my illness. Being in pain and having doctors question my sanity nearly broke me. Losing people who I thought cared for me was devastating. I either had to stand up for myself or otherwise suffer in silence. It takes a particular strength to wait and undergo tests. It takes strength to keep going. It takes strength to leave a job when you are no longer able to physically do it. It takes strength to live life knowing that some people are no longer in it. My story is not unique in this way; I know that many others go through similar heart wrenching health battles. I had to decide to ignore all the noise and advocate for my body because I knew something was wrong. Being sick taught me to fight harder for myself, to fight for my health, and my body’s future.
Recently, my friend told me she was impressed with my positive attitude surrounding all of this. I chuckled because it is not always like this. Sometimes I can’t get out of bed in the morning not just because I slept for 2 hours, but because I am angry — angry that I am sick. I am furious that while people are out there, I can barely manage to take my dog for a walk. And I still have those days, but then I have days where I manage to meet up with friend outside of my apartment and I almost feel like myself and I think: I can do this.
I can live with this disease. I am beyond blessed to be on the road to recovery. It is a long road. It is a tortuous road, but a road nonetheless.