For the past few years, I have been wondering if the symptoms I was experiencing were in my head, or if something was actually wrong. I was so anxious about it that I would avoid thinking about it altogether.
After a few scares that I could no longer ignore, I was suddenly hit with a diagnosis that explained and validated everything.
At the beginning of the summer, I was diagnosed with systemic lupus erythematosus. Although it still hit like a ton of bricks, it was relieving to have a diagnosis that many wait years for.
Lupus is an autoimmune disease that attacks the body’s tissues — brain, vascular system, muscles, joints, skin, etc. The worst part — there’s no cure yet. Everyone diagnosed with lupus presents with different symptoms — no two diagnoses look the same.
According to the Lupus Foundation of America, an estimated 1.5 million Americans have lupus. Most people start to develop symptoms between the ages of 15 and 44.
That being said, 1 in 3 lupus patients also suffer from other autoimmune diseases. Personally, I have at least three diagnoses.
One person could have milder stomach issues, weight loss, a butterfly rash and poor circulation, while another person may be bedridden and starting dialysis for kidney failure. All lupus patients face challenges resulting from the disease, no matter the severity of their symptoms.
Regardless of the symptoms, having lupus is difficult. The disease can come with the hardship of needing to process that there is no cure, having depression, not being able to get out of bed, being fatigued for no reason or having to wear gloves in the summertime.
I would have moments when no blood would circulate to my feet, I would randomly break out into hives, or my hips would pop as I walked around campus. I even lost 30 lbs within three months this past spring and watched my handwriting deteriorate from arthritis. I know these symptoms could be worse, but at age 21, it is scary to think about what comes next if I can’t get things under control.
My mom, uncle, aunt and cousin have all been diagnosed with lupus or another form of auto-immune and I never thought I would be affected. I would sympathize, look up information on the disease and try to relate, but I could never truly understand until I started going through it myself.
What I would want people to know about having an invisible illness is that it’s not as easy as it looks. I’m not being lazy when I take the elevator; I’m not being dramatic about my symptoms, and it’s definitely not in my head.
To my friends, I am not bailing on plans because I want to — I am hurting. To my teachers, I am not failing because I want to — focusing in class with brain fog and writing with arthritis is difficult. To others with lupus — we are not alone. To those who want to provide support — just have patience with me.
When I first got my test results back three years ago, I wasn’t convinced. I didn’t have many symptoms yet, and my doctor wanted to wait. After gaining more symptoms within this past year, I knew it was time to take another test to make sure my initial Antinuclear Antibody test wasn’t a fluke. I was convinced I was just self-diagnosing, but really, I was scared that I would have lupus. It’s not a joke to have it, and people do die from it, so the idea of having this disease was frightening.
I will never forget the moment when my rheumatologist said, “If you’re thinking it’s all in your head, it’s not. I believe that you do have lupus.” He constantly sees patients who have previously been told it was in their head, asked if they just wanted drugs and more.
Personally, I had a primary care physician who told me, “Maybe it’s asthma, but I’ll prescribe you some antibiotics just in case.” He had no idea what was going on and just threw some medicine in to make me feel like something would change. With the next issue I brought to him, he told me to go to the county clinic. It felt like a joke.
Luckily, I found a new doctor who listens, I have medical insurance, and I can afford the Plaquenil they prescribe for inflammation and arthritis. However, not everyone is that fortunate. If Plaquenil doesn’t work, many take a low dose of Methotrexate, a chemotherapy drug, to manage their symptoms. I am also going to be applying for assistance with the Office of Accessible Campus Community and Equitable Student Support for help in my future classes. Even getting a note to allow me to type my notes in classes that don’t allow laptops will be extremely helpful.
But just managing the symptoms isn’t the answer. The end goal is to find a cure or a reason as to why this disease develops. It’s mostly genetic, from what I’ve gathered. But why does it occur? Every year, the St. Louis Lupus Foundation holds an annual walk in Chesterfield, Missouri. I went last year before I knew I was directly affected to support my family, and despite having debilitating sensitivity to the sun, so many individuals diagnosed with lupus walked to raise awareness for the disease that has changed their lives.
I am mad. Mad that my mom went through the things she did to get her diagnosis, mad that my body will not cooperate when I need it to, and mad that more advancement has not been made. But I am also so thankful for the bosses who let me take the day off when I’m having a hard one, for the friends who walk a little slower in crowds so I can keep up when my hips won’t work right, and to the people who were there when I was questioning my sanity.
All I ask is that individuals be more aware. Not everyone is healthy, even if they look like it on the outside. Don’t automatically assume their weakness is out of laziness or being tired. I currently work three part-time jobs, and I am taking summer school. It’s not exactly ideal, but it is what pays the bills.
That being said, I didn’t write this out of a desire for pity. I wrote this because I want those around me to understand where I am coming from. I want people to understand that others are going through things, too. I want individuals to realize everyone has an issue in their life they can’t control or change, and we should all be supportive of our friends and family when they need it most.