Here’s the thing about invisible illnesses: unless you suffer from one, you will simply never understand. And that’s okay; all I ask is that you’re empathetic and understanding.
Let me tell you about a memory from middle school. I was diagnosed with Rheumatoid Arthritis (RA) at the age of 12, I’ll go into more detail about what that means in a minute. I’ll never forget this instance involving my very best friend in the entire world, Courtney. And I mean, truly this girl is my sister; we’ve been besties since babies. She knows me better than anyone in the world, and probably loves me more than anyone else does too.
Anyway, back to the story: one time in the seventh grade, I was standing at her locker waiting for her to finish so we could walk to class. She accidentally hit my wrist with her locker door and I collapsed to the ground. Seriously, I was in the floor, on my knees holding my wrist and crying like she had broken it…because that’s how it felt. I was in excruciating, knock-the-breath-out-of-me pain from a small, careless tap of the metal locker door.
Understandably, the 13-year-old version of my soulmate laughed at me. She looked down at me and said, “Wow, you’re being a little dramatic, Emily. Get up.” In addition to sincerely apologizing, she has more than made up for this isolated instance over the years. I tell you this to illustrate that if Courtney, the person who loves me more than anyone else in this world, could think I’m over-dramatizing my condition for attention, then of course strangers and acquaintances would make similar assumptions.
Most people have never heard of RA; when they hear arthritis, they assume I have what their grandma has, but that’s osteoarthritis and it’s completely different. You get it as you age from years of using your joints. It’s the general wear and tear of the cartilage that acts as a sort of lubrication between your joints.
Rheumatoid is an autoimmune disease, more closely related to Lupus and Fibromyalgia than typical arthritis. It’s genetic, but I’m the only one in my family that I’m aware of who has it. Lucky me. Your immune system serves a purpose: it attacks foreign bodies that don’t belong to keep you well.
One thing people never think about is this — my body is constantly working overtime under the surface. It is expelling energy 24 hours a day into fighting what it believes are foreign bodies. I never gave it permission, and I can’t stop it. That is energy I could be using, but it’s stolen from me. I sleep an average of ten hours each night and I’m still always tired, because my body is constantly in fight or flight mode. Instead of using that energy to go to the gym, or play fetch with my dog, or focus on my work, it’s spent attacking myself internally.
The internet refers to this as The Spoon Theory; it’s this idea that each day you wake up with a finite number of spoons (I have no idea why spoons were the chosen form of currency) and every activity you choose to do costs you at least one spoon. Even just getting out of bed and showering is difficult for someone with my condition.
When I was first diagnosed, my immune system was focused on my wrists, hands, and fingers. Once it attacks the joints and causes damage, it’s not reversible. The goal of my doctors was to stop the attack on my hands to hinder any further damage, but what was done was done. I went from a competitive cheerleader who stunted and tumbled, to wearing knuckle-to-elbow black braces on both arms and couldn’t even do a cartwheel. To this day, if I go to get up off the floor, I lean on my fists because I can’t put my hands flat on the floor and apply pressure — it’s just too painful.
Over the years, it has migrated around my body. One year in college, my feet were so swollen and painful, I couldn’t wear anything but flip flops. My knees were the primary source of pain a few years ago. I’ve had flares and frozen shoulders that left me completely immobile for days at a time. Some days, my neck feels too weak to hold my own head. Other days, I walk like an 80-year-old before hip replacement surgery. There’s really no discrimination — any joint in the body is vulnerable to attack.
I’ve been prescribed more drugs over the years than I could possibly recall, but the main ones include non-steroidal anti-inflammatories (NSAIDs), steroids, muscle relaxers, and injections.
The first injection I took was Enbrel. I can still remember sitting at the kitchen table while my mom stabbed me in the thigh with that devil needle. If you know anything about the relationship between teenage girls and their mothers…it was like pouring gasoline onto a fireworks stand. It did nothing to bring us closer together.
I was later switched to Humira, which I’m still on today. That was the first time I learned about the screwed up health care insurance system. My doctor told me, “Humira is a better drug, but your insurance won’t cover it unless you fail on Enbrel because it’s cheaper.”
I’m sorry, what?
The second time was when my mom was switching jobs in 2010. I was a freshman in college. She didn’t tell me at the time, but she was in a full blown panic, because her new insurance was refusing to cover me as I had a pre-existing condition.
For reference: one month of Humira…that’s only TWO injections, is $7,250 without insurance.
I’ve given myself shots of Humira every 14 days for well over 10 years now. Unless, I’m sick, of course. You see, having an autoimmune disease means that since my immune system is spending all its precious time focusing on healthy tissue, it has no energy to fight off actual bacteria or disease. And Humira is an immuno- suppressant, so it further eliminates what is left of my white blood cells.
I was Patient Zero in Arkansas with the Swine Flu (H1N1) in 2009. I had strep throat so many times, they took my tonsils at the age of 26. I regularly get the flu even with the flu shot.
Bronchitis. Upper Respiratory Infections. Sinus Infections. Staph Infections. MRSA. You name it, I’ve probably had it at least once.
The other injection was called Methotrexate (MTX), which is used for lots of things in different doses. In high doses, it’s chemotherapy, and a lot of RA patients lose their hair when they’re on it. Luckily, I only lost my eyelashes. I wish I could blame it for my brows too, but hey, it was the early 2000s. We all over-plucked.
It’s also an abortion drug. When they put me on it, my doctor at Arkansas Children’s Hospital wanted to prescribe the Pill too, but I refused. I was only 12, and no where near sexually active. Hell, I didn’t even have my period yet. He told me that was my decision, but I’ll never forget him looking at me, a whole child, and stressing the importance of birth control. He told me if I ever were to get pregnant while taking MTX, an abortion would be medically necessary, as severe fetal deformities and defects would be absolute.
In fact, when I got married, I had to go off of it 6 months prior to trying to conceive. Thankfully, I did so well off of it, I’ve never gone back on it, and my current Rheumatologist supports this decision. That was almost five years ago, now. He says it’s always there if I need it in the future, but as long as I’m okay without it, I can stay off of it. The side effects are atrocious. I always felt like complete shit the day after taking it. And it was weekly instead of bi-weekly. So every seventh day, I had a full 24-hour hangover.
Another issue with RA is that it doesn’t just stick to joint tissue, organs are fair game. Most commonly, it’s the heart and lungs. As if heart disease weren’t already the leading killer of women. So far, I’ve been good on that front, but I’m still young. Most patients don’t develop RA until their late 30s. Let me remind you, I was 12, so who knows what kind of shape I’ll be in as I age.
However, NSAIDs, Opioids, Humira, and over the counter pain relievers (Tylenol, Ibuprofen, Advil, Aleve, etc.) all take a toll on your liver. I’ve had elevated liver enzymes over the years leading to CT Scans, Fibroid Scans, Ultrasounds, and ultimately a liver biopsy, where they put me in a CT machine and stuck a 10 inch needle in between my ribs to retrieve a liver sample. It was as fun as it sounds.
I did my fair share of binge drinking in college and after my divorce, but the liver issue has kind of scared me into being sober this year.
Every other year, I get ultrasounds on my hands and feet. Once a year, they do X-Rays of my hands, feet, knees, and spine. Every 90 days, I get bloodwork drawn and a urinalysis. And that’s just maintenance when I’m doing well.
Did you know people with invisible illnesses have a significantly higher risk of suffering from depression, anxiety, and other mental illnesses? This stems from being trapped in a body that betrays you on a daily basis. You can add Lexapro to my list of drugs above.
Being sick so often forces me to miss out on work and social engagements. Sometimes, I simply don’t have the energy at the end of the day to do anything except cuddle my dog. Even as an introvert, spending that much time at home, alone, and not feeling well sends me into a full spiral of depression.
When I travel, I get panic attacks, worrying that I’ll have a flare when I’m out of town. Then, I will have let down my travel partners, and wasted all of this money, just to see the inside of a hotel room, because I’m not well enough to explore. It’s not an unfounded fear; it’s actually happened before.
On top of that, I’m anxious about not being at home in my own space where I’m comfortable. I know how to be sick at home. I’ve found ways over the years to cope and suffer through; it’s a whole different ball game when I don’t have access to my doctor, pharmacy, heating pad, bath tub, various bandages, braces, wraps, etc.
I don’t remember what it feels like to be free of pain. I live every day with a constant dull ache; I move wrong and experience a sharp, shooting feeling. It’s just my life; I truly don’t know what it’s like to be comfortable or feel well.
One doctor described it to me this way: You know the pain scale, they have posted up at doctors’ offices with the little smiley/crying faces? It’s a 0–10 rating. Well my zero is a healthy person’s three; my three is someone’s normal six, and so on...
So, you can see how I very quickly have learned to live with pain, that most people would consider off-the-charts, excruciating, and unbearable.
There have been many mornings, my hands were so stiff when I woke up that I couldn’t brush my hair or my teeth. I couldn’t reach behind myself to strap my bra, or maneuver the button on my jeans. I couldn’t tie my shoes.
No one can possibly know there is anything wrong with me just by looking at me.
On the outside, I look like a perfectly normal, healthy, 28-year-old woman. I’m 5'5. I have long blonde hair and blue eyes. I no longer wear the black wrist braces, unless they’re particularly painful that day. I don’t use a walker, or a cane, or a wheelchair. I don’t have an oxygen tank, or a face mask.
When I get out of my car with my handicap hang-tag, I get judgmental looks, which I understand, because no one who looks like me could possibly be handicapped, right? That’s why I wrote this today. I want people to understand that invisible illnesses are real. They exist. You truly can never judge a book by its cover. I would give anything to have my content match my book sleeve. But that is just not the hand I was dealt, and I made peace with that many years ago.
I hope anyone who reads this remembers it when they see an unconventional service animal, handicapped parking, or anything else. The human body can have an innumerable number of ailments, and young people are not immune. Just because I don’t have white hair and wrinkles, doesn’t mean I can physically make it through a SAM’s Club without assistance.