Can I be honest with you? Having lupus is no joke. The constant fatigue, joint pain, and brain fog can be overwhelming, plus the unpredictability of this everlasting chronic disease weighs on the body and soul. But, what is a joke is how often lupus is diagnosed wrong. It’s like the medical field has a game of “let’s see how many times we can screw around with this lady’s diagnosis before we get it right.” (If you’re looking for a deeper dive into what is lupus, read this.)
So, why is this diagnosis such a challenge? Well, for starters, the symptoms are so vague that they can be mistaken for a plethora of other diseases, like rheumatoid arthritis, Sjogren’s, Hashimoto’s, fibromyalgia, and rosacea. After all, lupus is known as the great imitator. For instance, joint pain can be chalked up to arthritis, and fatigue can be attributed to depression. And it shares symptoms with so many common illnesses, like the flu and COVID. It’s like a big game of “guess the disease” with the body as the prize.
And don’t forget about autoimmune diseases – they’re like the chameleons of the medical world, always changing colors and pretending to be something they’re not. So, when multiple diseases are thrown into the mix, things can get pretty messy to properly diagnose lupus requiring the rheumatologist to be both a detective and a wise physician.
But wait, there’s even more! Autoimmune diseases like to progress in stages, which means that an early stage of one disease can look suspiciously similar to a fully-developed stage of another. It’s like trying to differentiate between a caterpillar and a butterfly – they both have wings, but one of them is way more fabulous. (No surprise that a beautiful butterfly is the symbol of lupus).
Most lupus patients are women and let’s face it, we’re just more likely to speak up when we’re not feeling well. But unfortunately, our vocalness can sometimes be our downfall because some doctors might dismiss our symptoms, thinking we’re just being dramatic or emotional or some other bullshit answer. To quote the great Cher in Clueless, “AS IF!” Don’t let anybody gaslight you when it comes to your medical care!
And just when you think you’ve got lupus all figured out, the bloodwork doesn’t support the diagnosis. It’s like a bad breakup – you thought you had a good thing going, but it turns out it was all just a cruel joke.
From all of this information, you can understand why it takes an average of six years to receive a proper diagnosis of lupus. Six years, my friend is a hell of a long time to have a body writhing in pain and inflammation. This extended time to get proper medical care can have serious consequences on one’s long-term health and quality of life lived. Shockingly, studies have found that about 1 in 7 people with lupus are misdiagnosed simply because doctors don’t fully grasp the complexities of lupus or fail to consider the patient’s input.
Do you know why there isn’t as much clinical research on lupus as there is for other diseases? First of all, the complexity of this disease presents differently in different people making it tough to study and understand. Secondly, lupus is considered a rare disease and may not receive as much funding or attention as more prevalent diseases. Additionally, lupus predominantly affects women, leading to gender bias in medical research. But perhaps the biggest challenge of all is the lack of effective biomarkers, making it difficult to develop targeted therapies and measure treatment effectiveness. However, despite these challenges, there have been significant advances in lupus research in recent years, and the need for more research and funding is now being recognized. Let’s continue to raise awareness and support for lupus research, so we can find better treatments and, hopefully, a cure one day.
Now that you know about the challenges to diagnose, who or what do you blame for causing lupus? This is a difficult question to answer, but I’ll give it my best shot.
First things first, you did nothing to cause your lupus. You are not a bad person who is at fault here. Lupus can happen to the best of human beings, including you!
Back to that blame thing, there’s the internet. Yes, I said it. The internet is responsible for our lupus misdiagnosis. How, you ask? Well, have you ever googled your symptoms? If you haven’t, good for you. But, for those of us who have, we know the internet is full of fear-mongering and false information. Suddenly, a simple headache turns into a brain tumor, and a runny nose means you have the plague. It’s no wonder we’re all misdiagnosed with lupus.
In all seriousness, medical research isn’t entirely sure what brings on lupus, but they believe it’s genetics, the environment, or a combo of both of these.
Genetics and Lupus
While there are some gene variations associated with lupus, the Lupus Foundation of America notes that there is no definitive set of genes that causes this disease. Surprisingly, the majority of people with lupus have no family members who have been diagnosed with the condition. However, it is not uncommon for other types of autoimmune diseases to appear in family members.
If lupus is present in your immediate family (think mom, dad, or siblings), then statistically, you have a higher chance of developing the disease. In fact, only about 5% of the children of individuals with lupus will develop the disease. (I’m going to pause here and acknowledge that my daughter who also has lupus is statistically quite unlucky based on this stat).
It’s important to note that having a genetic predisposition to lupus does not guarantee that a person will develop it, but an environmental trigger could increase the likelihood. This occurs because environmental factors can damage cells, which can then spill out the genetic predisposition of lupus into the cells.
Hormones: Sex hormones, in particular, are especially important in the development of lupus. Women are way more likely to develop lupus than men, like 90% higher, and this is thought to be due to women having higher levels of estrogen. Those damn female hormones are at it again! While both sexes have estrogen, females’ levels are typically much higher. This is certainly true during menstruation and pregnancy. From this, you probably aren’t surprised to hear lupus commonly being diagnosed during childbearing ages of 15 to 45.
Environment and Lupus
Unfortunately, there are still a lot of unknowns when it comes to lupus and what environmental factors can trigger it (big surprise you say). It is important to note that while these environmental factors can trigger lupus in people with a genetic predisposition, not everyone who is exposed to these factors will develop the disease. It is likely that a combination of genetic and environmental factors is required for the development of lupus.
Silica dust is no joke, and if you’re working in construction, stone masonry, or ceramics, you might want to watch out. Because let me tell you, breathing in that dust is a risk factor for autoimmune diseases, including lupus. If you find yourself around these areas, wear a protective mask. But it’s not just work hazards and bad habits we need to worry about.
Smoking: Smoking is a terrible habit that has been linked to the development of lupus, in addition to many other diseases that shorten one’s lifespan. And, yes, this includes vaping too. Smoking fills your body with toxins and can cause inflammation and damage to the lungs. Please, please get help to fight this addiction asap.
Infections like Epstein-Barr virus (think mono) or cytomegalovirus (did you just struggle to say that one out loud?) have also been linked to the development of lupus. These infections can trigger an abnormal immune response, leading to the development of lupus.
And let’s not forget about the toxic chemicals in our environment, like solvents, pesticides, heavy metals, air pollution, and UV light. These things can mess with our hormones and immune system at the cellular level. And while there’s still more research to confirm if they cause lupus, let’s use some common sense here. Mold, toxic gas, pesticides, and too much sun are never a good thing, especially for those with chronic inflammatory diseases like lupus. So, do what you can to limit your exposure to these factors and stay safe out there.
In conclusion, genetics and the environment are both to blame for the development of lupus. While genetics plays a significant role in the development of the disease, environmental factors can trigger lupus in people with a genetic predisposition. It is important for people with lupus to be aware of these factors so that they can take steps to manage their disease. By understanding the role that genetics and the environment play in the development of lupus, we can work towards better treatments and, ultimately, a cure for this complex autoimmune disease.
In conclusion, lupus is a serious disease that affects 1.5 million Americans But, sometimes, we need to find humor in the situation. So, the next time you’re feeling down about your lupus misdiagnosis, remember – you can blame the internet, your genetics, and the world. Feel better? No, I didn’t think so. Here’s a virtual hug coming right at you.