Chronic Illness, Phone Tag, and a Depressing Start to the Week

Chronic Illness, Phone Tag, and a Depressing Start to the Week March 9, 2021

The doctor’s office called this morning, when I was half asleep and depressed.

I had been a little depressed since Saturday when I took my walk, and it hadn’t gone away. I feel like we should be able to speak publicly about such things, because if we don’t, then people suffering them might think they were alone. I was depressed. Not the kind of depressed where you cry violently until your head hurts, but the kind of depressed where you sink back into yourself until the whole world seems like a matte painting in a bad movie. If you haven’t been there, I don’t know that I could describe it for you any better than that.

I hadn’t slept well in a couple of days, which sometimes is a symptom of depression and sometimes is a symptom of my fibromyalgia (which can cause depression).

If you don’t have a chronic illness, you might not know that chronic illnesses come in clumps, all tangled together by their tails like a rat king. People don’t usually have just one chronic illness. They have a lifetime of chronic complaints that are comorbid with one another, and nobody knows the exact cause. I had juvenile rheumatoid arthritis when I was three, irritable bowel syndrome and migraines for years afterwards; then the migraines receded and I had severe anxiety for a variety of reasons, not all of them physical. As an adult I had appendicitis and then a freak bowel obstruction six months later, and then severe gallstones that wrecked my gall bladder almost exactly a year after that. Then the fibromyalgia started. Then I got pregnant and the fibromyalgia went into remission for a time. I had PTSD after Rosie’s disaster birth and was unable to have another baby ever since. When Rose was weaned, the fibromyalgia came back along with a host of weird hormonal symptoms the doctors blamed on my being fat, but I could not lose weight no matter how I tried. I was thirty-six last year when a doctor finally diagnosed poly-cystic ovary syndrome, which caused some of these sicknesses and happens  frequently alongside most of them without doctors knowing exactly why.

That’s the short version of my medical history. The long one would take hours. And if you meet another person who’s chronically ill and ask them what, exactly, is wrong, you’ll get a similarly long and unsatisfying explanation. Sometimes bodies break. When they break, they don’t just break into neat pieces. They break into a myriad of jagged fault lines and cracks that don’t make any sense.

In any case, the doctor’s office called this morning.

I had been trying to call the doctor since more than a month ago, when I flunked a glucose tolerance test. The doctor had told me that being in ketosis was a new way to treat Poly-Cystic Ovary Syndrome and suggested I go on a ketogenic diet. He also ordered a glucose-tolerance test to see if I’m one of the majority of people with poly-cystic ovary syndrome who have insulin resistance. He didn’t tell me to get off the ketogenic diet for several days before taking the glucose tolerance test. Neither of us knew that drinking a glass of glucose on a fasting stomach when you’re in ketosis will cause a giant blood sugar spike. When I realized this mistake, I called the doctor’s office and left a message with the secretary. I heard her muttering things I didn’t say to herself as she wrote down my blood sugar numbers and asked how to spell “ketosis.” And sure enough, instead of ordering a new or different test, the doctor ordered me to take metformin to lower my blood sugar. I took the metformin and got severely ill, so I consulted with other nurses who asked doctors more familiar with insulin resistance who told me the metformin wasn’t appropriate. I called my doctor, or rather the secretary, to tell him how ill I was getting on metformin. He, or rather the secretary, called this morning when I was half asleep.

I had a script written out so that I could talk assertively with the doctor. I had the name of the other blood sugar test written down, so I could ask him for that test and explain my concerns. I had rehearsed my script over and over again. I was good at my part. I was really convincing in the role of an informed patient talking rationally with a doctor whose specialization was gynecology, about blood sugar issues and endocrinology. The doctor in my script was glad to know what I’d figured out. The doctor in my script noticed how sad my voice was and asked if I was feeling a little depressed, and I’d bravely admitted that I was depressed. The doctor had written a prescription for a nice little dose of Lexapro– the dose I respond well to, the tiny dose meant for teenagers, not the high dose that can jack up my anxiety. And the play I’d written had had a happy ending.

I didn’t have a script for a secretary. Secretaries aren’t medical professionals. They’re impenetrable walls that medical professionals build around themselves so patients can’t get a clear message through.

I didn’t have any script at all with me in my bed at nine in the morning, when I was half awake and feeling like the world was a matte painting. I couldn’t remember my lines. I couldn’t even remember “a1c3.”

The secretary informed me that I should go back on the metformin but build up the dose slowly this time or, if I preferred, the doctor would call in a new blood sugar medication for me. She added that I should “keep losing weight.”

I forgot my lines.

I mumbled that I’d take the new medication and keep losing weight.

The secretary said something pleasant and called me “Honey,” which isn’t patronizing in Appalachian parlance.

I hung up.

I gave up.

The depression is worse now.

If you know someone with chronic illness, you have to understand that they are dealing with situations like this all the time. Constantly, with no end in sight.

There is constant new information that they’re trying to digest. They’re constantly trying to coordinate their own care with different physicians, each of whom are experts in one system of the body and not up to speed on another. The doctors are constantly getting their lines crossed. Secretaries are a constant barrier to communication. Nothing works.

If you’ve ever given unsolicited medical advice to a chronically ill person and didn’t understand why they got mad at you– well, this is why. If, God forbid, you’ve ever accused a person with chronic illness of being in denial or not trying hard enough and they’ve screamed at you, this is why. If you told us “see a doctor” as if we weren’t already seeing several, I hope you understand now why they got so angry. We are up to our ears in medical advice. We are constantly seeing doctors. We have to figure out everything for ourselves, and we have to do it for the rest of our lives because there’s no cure for this.

And now I really am depressed. Not the matte-painting kind, but the kind where you cry violently until your head hurts.

I find that, when I write about chronic illness, some people get uncomfortable with me. They start talking down to me as if I’m flailing for attention. I’m not. Some days I’d like attention, I suppose, but that’s not my reason. My reason is twofold: I want people who aren’t sick to really understand what it’s like, so they’ll learn to have empathy. And I want people who are sick to know that they’re not alone. The frustration and despair you feel is normal. Everyone who’s chronically ill feels that way. You feel that way because you’re human. You’re a human being whose body broke along invisible fault lines and this is a depressing, frustrating, maddening situation to be in. I wish I could make it go away, but at least I can tell you that what you’re feeling is normal.

I can also tell you that you’re a lot stronger than you think. You’re a hero, whether you feel like one or not.

And you’re not alone.

Even if you’re so depressed the world seems like a matte painting or you want to cry violently until your head hurts, you are not alone.

There’s a whole lot of us out here, suffering with you, and you’re not alone.

I hope knowing that makes it a little better.

 

Image via Pixabay

Mary Pezzulo is the author of Meditations on the Way of the Cross and Stumbling into Grace: How We Meet God in Tiny Works of Mercy.

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