What I Want People To Know About Lupus

What is Lupus Not?

Contrary to popular misconceptions, Lupus is not contagious. Just as my friend in the above story exhibited his lack of awareness on this topic, the truth is, he isn’t alone. A survey by LupusUK.org, one of the largest Lupus-related organizations in the world, brought in over 35,000 respondents. Of that, only 62-percent said they were comfortable hugging someone with lupus and only 55-percent were comfortable sharing a food or drink item.

The bottom line: You cannot catch lupus – not through physical contact, saliva, or any other manner. Lupus is autoimmune disease and can occur when your immune system malfunctions. Scientists also believe lupus patients have a genetic predisposition that can cause lupus symptoms to express themselves once triggered.

Everyday is an Adventure for Us – And Not Always a Good One

Do you have a friend or loved one with Lupus? Do you ever wonder why one day you can see us out and about, and the next day we are trapped in bed, exhausted and overcome with symptoms? That is our reality every single day. Autoimmune diseases and its symptoms are triggered by stress – both good stress and bad stress. It’s unavoidable because just like everyone else, we need to go to work, run errands, take care of our children, or even just try to enjoy an outing with friends. But this stress can come at a price.

What many people do not see is that putting on our “game face” in front of the world and attempting to enjoy time with friends and family is often followed by a retreat cycle, where we contend with relentless physical exhaustion and a plethora of symptoms such as fevers, rashes, mouth and nose sores, joint pain, shortness of breath and much more.

While the aftermath of a busy day is a difficult thing for us to endure, what can be worse is when we are accused of being lazy or “faking our symptoms” during this rest and recovery cycle. If we fail to recover, our body can go into a flare that can last weeks, or even months, and have devastating and potentially life-threatening effect on our organs.

As a friend or loved one, the best thing you can do in this situation is ask if we need anything, offer to bring a meal, sit and watch a Netflix show with us, or take the children for a few hours so we can get some uninterrupted sleep. Basically, show us some love and understanding.

Lupus Is Easy to Diagnose

Sorry, but that’s a lie! Cue blaring buzzers, because this right here is quite possibly one of the biggest myths when it comes to Lupus. Sadly, lupus isn’t a disease that is easy or efficient to diagnose. In fact, according to a variety of studies and research, like this one from the National Institutes of Health, the average time frame from first symptoms to diagnosis is 6.4 years! The reason for this wait is because symptoms of Lupus mimic many other diseases and may not all appear at the same time.

Lupus is Just a Woman’s Disease, Right?

The truth is lupus affects both men and women, though more women are diagnosed with the disease. Of the 5 million estimated cases, 90-percent are women.

If you didn’t already know these facts about lupus, you just learned five important pieces of information in just a few minutes. With this new knowledge, you can now show an increased understanding and support to people living with lupus and hopefully help spread awareness.