The Invisible Illness
It was a beautiful but hot and humid Louisiana morning and Anna decided to drag her seven-year-old and five-year-old to shop for swimsuits for the summer that was soon approaching. She debated going to the mall because she was still so weak from getting over the flu for the 4th time in the past two months. She finally mustered up the courage and patience to drive through Baton Rouge traffic even though she could already feel a new migraine coming on like an ax chopping down on a piece of wood. Someone cut her off on the interstate and she had to bite her tongue so as not curse in front of her blonde-hair children who had so cunningly begun to repeat everything Momma said. Then her blue-eyed baby boy started to whine because he had to potty and his older sister began to sing at the top of her lungs – she was on pitch, but she was LOUD…or maybe it was the migraine finally seeping into her ears. Anna clenched her fists on the wheel, knowing that her knuckles and wrists would come for her later that day as she strained them. Her legs and hips were already dreading the walking they would have to do and her back and neck were already complaining about having to hold the baby boy while they shopped. She calmly pulled into the mall parking lot, “Why on earth did I do this? I hate the mall. I hate parking here. People can’t drive,” she continued to think to herself. James started to whimper and finally started shrieking and Mary finally had enough and said, “Momma, please make him quiet. I can’t hear myself singing.” The young mother made her way around the parking lot one more time and finally had to settle for a handicapped parking spot – even though she didn’t want to.
Once parked, she rubbed her temples, put her sunglasses on the dash and got out the car. The pounding in her head was increasing, like someone decided they wanted to chop wood AND cut down trees with a chainsaw, simultaneously but she decided to be strong for her babies and persevere. It was then that she caught the ugly sneer of a woman coming out from the mall, looking down upon her as she quickly and adeptly removed her son from his car seat and made sure Mary didn’t run into the street. Even though there was fire radiating down from the sun and the black pavement felt like a bed of hot coals, Anna could only feel that woman’s glare burning into her soul. She knew the woman was going to say something as soon as she passed by her and she was right…the woman sneered, “Really, you were just too lazy to walk? Jesus woman! Set an example for your children – some people actually need those spots as they are for the handicapped…are you handicapped? No, I didn’t think so.”
Anna’s lip began to tremble, and she was going to push past it when her hip caught as it did every so often after she sits for too long and her migraine finally split her head into two and her joints in her hands and wrists began to tighten and send shooting pains down her fingertips and up to her heart as they struggled to hold onto her blonde babies. This is when her seven-year-old looked up at her with stormy green eyes in despair – she lost it. She started crying, ugly sobbing in the middle of the mall parking lot. That righteous woman looked on in shock and glee, thinking that she had done the right thing and made this young mother feel guilty for “stealing” a handicapped parking spot.
The young mother threw her kids back in the car, despite James’ wailing about having to potty, and pulled down her handicapped placard in defeat and drove home. She sniffled and wiped her tears on her sleeve and looked back at her daughter who went so uncharacteristically silent…she was met with the same stormy green eyes looking at her in the rearview mirror.
“Momma…are you ok?”
“Yes, sweet potato…Momma is just tired and I’m sorry for crying.”
“You always say it is ok to cry if we have a good reason…James cries when he is tired. I think I do too,” the little girl mused.
Anna decided to let the little girl think, knowing that her big bright brain would certainly come up with another question.
“Momma, why did that mean old lady say that?”
“Mary, we cannot call her old, that is not nice.”
“Well she was,” the little girl retorted.
Anna laughed a little and kept her chin up as she explained, “You know when you are not feeling well and are sick, that you have your temperature taken? Or when you scrape your knee and you have to put a BandAid on it? Or when I hurt my ankle and had to wear that cast?”
“Yes” she replied, obviously following the train of thought.
“Well,” Anna continued, “Some people are sick or hurt and you cannot see that they are sick or hurt…and Momma is one of those people. Mom doesn’t always feel great but people cannot see that so they think I am very healthy.”
The little girl looked at her mom, “Is this why you get tired?”
“Yes,” the mom replied, relieved that her explanation made sense in a seven-year-old’s brain.
Flash forward eleven years…
That little girl is now a young woman, she is nineteen years old and can still remember the looks her mother would get…she didn’t fully understand at the time but over the years, her mother, Anna, has explained her many diagnoses.
Anna was fifteen years old when she was told she had fibroid tumors and endometriosis, only the beginning of her battles with her thyroid and female endocrine system. Anna’s diagnoses and illnesses continued throughout the years; She was diagnosed Hashimoto’s disease when she was nineteen, had a ruptured appendix at twenty, declared to have an underactive thyroid at twenty-one, fertility complications at twenty-six, a fractured pelvis at twenty-eight, an emergency surgery to remove her gallbladder at thirty, torn ligaments in her ankle at thirty-four, SI joint dysfunction when she was forty, and we will get to the “game changer” diagnosis later.
Anna was twenty-five when she married Jonathan and her list of diagnoses was already long, but it would continue to expand. Due to her endometriosis, Anna had to have multiple surgeries to clean out the implants in her uterus and ovaries but finally, Anna was able to conceive and have an overall healthy pregnancy without major complications. Then came the time to meet her little sweet potato that she had been carrying for 39 weeks but it was not the childbirth a woman ever wants to go through. She underwent over 24 hours of labor just to be told her baby was distressed and fighting the contractions. When she finally saw her baby, her beautiful baby girl was purple from lack of oxygen and Anna passed out from exhaustion. Thankfully, she woke up and was relieved to see her new baby and was able to snuggle her to her chest – her baby girl, Mary Lucille.
Anna loved to exercise and picked up long distance running in high school – she loved to run half-marathons and compete in triathlons. It was one simple thing she had control over when it came to her health. However, after Mary’s birth, her body was never the same. It was not until after she had another surgery to clean out the endometriosis implants and another pregnancy and childbirth did doctors find out that she had a pelvic fracture from her first childbirth. One that doctors simply didn’t catch because Anna didn’t speak up, one that causes her SI joint dysfunction today. Anna thought it was normal to feel that much pain because after all, new moms don’t complain about the pain when they have a bundle of joy placed in their arms. With the birth of her second child, her sweet baby blue-eyed boy, James Davis, she decided that two children were enough. She was happy but Anna was tired all the time, chronically tired. She brushed it off to being a new mother and working as a middle school teacher but never considered that there was something more, even though there was a little voice telling her there was something more going on.
The game changer was Rheumatoid Arthritis. Anna was thirty-three when she was diagnosed with Rheumatoid Arthritis (RA). It should not have come as a shock – she had thyroid issues and arthritis on both sides of her family, but it shook her world yet made all the puzzle pieces come together. Why she was tired all the time, why she was sick all the time, why her body simply hurt all the time – the pieces now all fit. Rheumatoid Arthritis is an autoimmune and inflammatory disease which means that your immune system attacks healthy cells in your body by mistake. RA usually attacks the joints but can affect other tissues throughout the body which explained her endometriosis, her Hashimoto’s, her appendix, and gallbladder issues. Yes, Anna’s RA affects her joints, but it affects her immune system more so and causes autoimmune disorders. Anna has chronic illness; for example, COVID-19, Anna was in one of the first groups to get the vaccine and has had all her booster shots to keep her up to date and vaccinated. Despite this she has been diagnosed with COVID-19 three times and when when antibody tests are done, not a single antibody can be found – her body has fought it all off. Anna has had to be re-vaccinated for all “childhood” vaccinations and still has chronic illness. This is because the RA fights her body’s immune system, causing it to destroy all antibodies previously made as well as attacking her joints causing flares. Anna even had to stop teaching because she was getting influenza six or more times a year.
Anna still tears up when she talks about all of her diagnoses – she thought she was going insane because she knew something was wrong with her, but nothing was coming up. Her friends and family did not understand her agony, they did not understand her chronic exhaustion. Her doctors thought she was just a tired new mom. It was not until she was diagnosed with RA that she could have a sense of relief that she wasn’t just insane, that she had a reason why she was so exhausted, that she wasn’t a crazy new mom. She had a reason for why she would wake up in the middle of the night because her joints felt as if they were being stabbed with pens and needles. She had a reason why she would always have viral infections and she had a reason why her migraines had escalated in frequency and intensity.
Mary looks at her mother – her beautiful, compassionate, tender-hearted, fierce, and strong mother and sees all the sacrifices, all the restless nights, all the therapy visits, all the doctor appointments, all the nights where Mary would help watch James because her Momma was too unwell to do so, all the days where her Momma struggled to keep a smile on her face, all the times where her Momma did not want to push her on the swing but did so anyways to hear her child giggle with joy, and all the times her Momma persevered and continued to battle. But to the mean, old woman in the parking lot those some eleven years ago, Anna looks like the epitome of health. She has no visible scars, no drastic limp, no swollen joints like people expect when she says she has RA. You cannot see her migraine or see that she is recovering from the flu yet again. People’s illnesses are not always visible to the naked eye and not all disabilities have physical components – we should be kind to everyone we meet because there is always a story lurking there, one that is often not how it looks.