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 incorrectly. 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.”
So, why is this diagnosis such a challenge? Well, for one thing, the symptoms are so vague that they can be confused with many other diseases, like rheumatoid arthritis, Hashimoto’s, fibromyalgia, and rosacea. After all, lupus is called “the great imitator” because it is so good at copying other diseases. For instance, joint pain can be chalked up to arthritis, and fatigue can be attributed to depression. It has the same symptoms as so many common illnesses, like the flu and COVID. It is like a giant game of “guess the disease” where the body is the prize.
And do not forget about autoimmune diseases. They are like the chameleons of medicine, always changing colors and pretending to be something they are not. So, when multiple diseases are involved, it can be hard to figure out what is going on with lupus. The rheumatologist needs to be both a detective and a smart doctor to figure it out.
But hold on, there is more! Autoimmune diseases tend to progress in stages, which means that an early stage of one disease can look suspiciously like a fully developed stage of another. It is like trying to tell the difference between a caterpillar and a butterfly. Both can be colorful, but one is way cooler than the other. (It’s no surprise that a beautiful butterfly is the symbol of lupus.)
From all of this information, you can understand why it takes an average of six years to receive a proper diagnosis of lupus. This, my friend, is one hell of a long time to have a body writhing in pain and inflammation. Having to wait longer to get the right medical care can hurt your health and quality of life in the long run. Studies have found that shockingly, about 1 in 7 people with lupus are misdiagnosed because doctors do not fully understand how complicated lupus is or do not take the patient’s input into account.
Who’s to Blame for Your Lupus?
Now that you know how hard it can be to diagnose lupus, who or what do you think is to blame? This is a difficult question to answer, but I’ll give it my best shot.
First of all, you did not do anything to bring on your lupus. You are not a bad person who is to blame here. Lupus can happen to the best of human beings, including you!
Back to that lupus blame thing, there’s the internet. Yes, I said it. The internet could be to blame for our wrong diagnosis of lupus. How, you ask? Well, have you looked up your symptoms on Google? 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 out to be a brain tumor, and a runny nose means you have the plague. It’s no wonder we’re all misdiagnosed.
In all seriousness, the medical community isn’t entirely sure what brings on lupus, but they believe genetics, the environment, or a combo of these. And they’re actively working on learning more about this disease, how it works, what triggers it, and what makes the symptoms better. In the meantime, patience is needed as the solutions are figured out.
Genetics and Lupus
While there are some gene variations linked to lupus, the Lupus Foundation of America notes that there is no definitive set of genes that cause 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 to 10% of the children of parents 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. Sorry honey!)
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. It’s those damn female hormones 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 is commonly diagnosed between the ages of 15 and 45.
It’s important to note that having a genetic predisposition to lupus does not guarantee that a person will develop it, but when you pair this with an environmental trigger, your risk increases. This happens because things in the environment can damage cells, which can let the genes for lupus into the cells. Let’s dig into the environmental factors to learn more.
Environment and Lupus
Lupus is most likely caused by a mix of genes and things in the environment. Unfortunately, there are still a lot of unknowns when it comes to lupus and what environmental factors can trigger it (big surprise, you say ironically). Even though these things can cause lupus in people who already have it because of their genes, not everyone who is exposed to them will get the disease.
Silica dust is no joke, and if you’re working in construction, stone masonry, or ceramics, you might want to watch out. Think of this as the career in which tile or stone is cut. 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 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 lupus. These infections can trigger an abnormal immune response, making it more likely that lupus will develop.
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 systems at the cellular level. And while there’s still more research to be done to confirm if they absolutely cause lupus, let’s use some common sense here. Mold, toxic gas, pesticides, and too much sun are never good things, 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 the End
To sum it all up, lupus is a serious autoimmune disease that affects 1.5 million Americans. It’s hard to diagnose for many reasons, and it takes an average of six years to properly be labeled with lupus. While genetics plays an important role in the development of the disease, environmental factors can trigger lupus.
But sometimes, we need to find humor in the situation. So, the next time you’re feeling down about your lupus diagnosis, remember—you can blame the internet, your genetics, and the world. Feel better? Nope, I didn’t think so. Here’s a virtual hug coming right at ya friend.