The Difference a Name Can Make

Have you ever thought about the way changing a name can change your whole perspective?

If you follow medical news at all, you might have heard that a consensus of health organizations has changed the name of the chronic illness that up until yesterday was called poly-cystic ovary syndrome (PCOS).

The sickness formerly known as PCOS,  is now called ‘polyendocrine metabolic ovarian syndrome” (PMOS). There’s no change in the official list of symptoms, the treatment or the diagnostic criteria, just the name of the illness. It’s still the same incurable life-ruining gigantic grab bag of symptoms, caused by a slight imbalance of hormones that’s sometimes hard to pick up on a blood test. This condition used to be called poly-cystic ovary syndrome because its most visible symptom was a collection of dots that showed up on an ultrasound of the ovaries– which we now know are not really cysts but arrested egg follicles. One of the symptoms of PMOS is that the body tries to ovulate at the usual time every month and can’t; it pushes and pushes on the eggs, so to speak, but they often don’t come out of the folicles in the ovaries when they’re supposed to. This causes infertility, which is bad enough, but it’s far from the only symptom.

PMOS is not a disease of the ovaries. It’s an endocrine disorder which affects every single part of the body, ovaries included. Female bodies always produce a small amount of androgens like testosterone, but if you have PMOS, your body produces a bit too many: a small hormonal imbalance that wreaks havoc. That imbalance causes anxiety and depression, hair loss and hirsutism, acne, crippling fatigue. It causes extremely painful ovulation;  irregular, painful periods; and if you manage to get pregnant, you’re at great risk for miscarriage and just about every pregnancy complication. PMOS causes severe weight gain from the tiny bit of extra testosterone fighting with the estrogen in the body, and it also causes insulin resistance that contributes to the snowballing weight gain as well as type 2 diabetes. PMOS puts you at risk for heart disease and a host of other dangerous conditions. The cause of the imbalance seems to be genetic. There is no cure.  It’s hoped that, along with the name change, there will be a change in perspective on PMOS now. Doctors and the public will stop treating the syndrome like a disease that just affects the ovaries, and recognize that it’s a serious illness which can ruin a woman’s entire life.

My longtime readers know that I was diagnosed with PMOS in late 2020, just before Christmas, at the age of thirty-six.

Before then, my constant struggles with severe fatigue and muscle pain were misdiagnosed as fibromyalgia, and there was no explanation at all for my other symptoms: the anxiety, the high cholesterol, the weight gain no matter what I ate, the irregular cycles and infertility. I was presumed to just be a bad person, ever since puberty when I started to get fat. I can’t even tell you how many doctors, family members, and total strangers informed me I was lazy and greedy and just needed to go on a diet.

I will never forget when a handsome boy I had a crush on at the Catholic elementary school referred to me as “a big fat pig,” when I knew he was in earshot. Many people called me “pig” after that. That last year of Catholic school, in the fifth grade before I had my breakdown and started homeschooling, I got called “pig” by my classmates all the time as if it was my name.

My whole family also got in on the act. My siblings delighted to call me “pig,” “fat pig,” and “fat, clumsy oaf.” They liked to snicker when my mother mocked me in front of them and put me on diet after diet with no results. She was mortified by me, and she let me know it. My extended family got in on the act as well. I remember overhearing my mother talking on the phone with my grandmother one day, after Granny mailed me a pretty flowered dress to wear for my Confirmation. “Oh yes, it’s a tent, it’s a great big tent of a dress. But it looks nice on HER.”

That’s only one of the reasons I told my family I didn’t want to see them anymore after I moved to Steubenville.

After that, I got sicker and sicker, and then I got a host of new names. As the fatigue, and the referred pain from the ovaries shooting up and down my back and legs, got worse and worse, and I had to stay at home disabled by my illness, a lot of people called me a hypochondriac. They accused me of faking my dizzy spells for attention. At one point I found some relief in an expensive mixture of herbal remedies that gave me a bit of energy, and I was accused of making that up and called a grifter. The herbal remedies had a great big dose of kola nut in them, and the caffeine that gave me the illusion of energy eventually led to a crash and even worse symptoms, and I got called irresponsible for trying herbal remedies. That pattern of trying things to get healthier, being mocked for them, and giving up, went on for years. I think that’s a pattern that almost everyone with chronic illness can relate to.

Eventually, I got my diagnosis of poly-cystic ovary syndrome. There’s no cure for the syndrome, but there are treatments. I had the type of PCOS that responded well to ketosis, so I’ve been in ketosis almost every day for years now. That keeps my blood sugar steady and stops the progression of the insulin resistance. It managed to get me down out of plus sizes, which doesn’t make me a better person, but it’s certainly convenient when I go clothes shopping. And it gives me energy. I am usually not bedbound with terrible unexplained fatigue. I’ll never be thin, and trolls still mock me for being so fat now and then. But my sickness isn’t spinning out of control anymore. It’s stable.

Now my sickness has a new name.

I don’t have poly-cystic ovary syndrome. I have polyendocrine metabolic ovarian syndrome. The name doesn’t really change anything, and yet it does. I don’t have a disease that primarily messes up my ovaries, with all the other symptoms playing second fiddle. I have a complicated endocrine disorder that has been a challenge for my entire life. And I’ve learned to cope with it.

I am not a pig. I am a chronically ill person. I wanted a great big Catholic family with seven children, and I ended up with one wonderful child who means the world to me. I am still processing my grief, but I’m getting there.  My symptoms are under control, so I can exercise and have a better life. I know what it’s like to be tortured by name-calling, so I’m very careful to break the cycle and just teach normal, non-stigmatizing, healthy eating and exercise habits to my child. Adrienne and I go to the rec center together and lift weights for fun, and then we cook dinner together afterwards. I didn’t get the life I planned on, but I’m learning to like my life. It’s gotten better every year since I’ve gotten away from the people who only thought of me as a pig.

That’s just one example of what names can do to a person, and how changing a name changes everything.

What about you?

Have you ever had a change in your name, or the name of something about yourself, that changed your whole perspective on life?