May is Lupus Awareness Month – so it seemed like a good time to talk about my personal journey with Lupus, as well as some shocking statistics about Lupus.
Hopefully, we continue to see significant advancements in research and treatment in our lifetime.
Already, since our parents’ generation, we have seen a reduction in Plaquenil dosing and an increase in effective holistic approaches that augment medicinal efforts positively.
The Lupus Diagnosis:
Getting diagnosed with Lupus is sort of a shocking blow.
A year later and I still can’t say, “I have lupus.” Instead, I say, “I’ve been diagnosed with Lupus.”
But, I think that’s okay.
For me, I like to think of Lupus as a separate entity. That gives me more momentum to fight for wellness every day.
And, it is a fight.
Lupus is a fierce opponent. It shows no mercy and takes no prisoners. Lupus never plays favorites and doesn’t care how you feel.
Since I like to know whatever I’m up against in the arena of life, I started researching Lupus as soon as I heard the news. I wanted to know everything I could about this new opponent in the ring.
What I learned will shock you. It sure shocked me.
Here are some of the startling statistics about Lupus:
Over 1.5 million people are diagnosed with Lupus.
That’s a lot of people.
By comparison, that’s about 15 football stadiums full of people.
Of course, that’s just the number of people diagnosed.
On average, it takes at least 6 years to get properly diagnosed with Lupus.
But, that’s just the beginning.
Over 63% of people eventually diagnosed with Lupus were misdiagnosed first.
Imagine how much better treatment could be, how much more effective any remedies tried could be, if people were more accurately diagnosed… faster?
The biggest issue is that when it comes to Lupus, no one test is 100% accurate. (source)
With the available data, they estimate 16,000 new cases of Lupus are diagnosed each year.
Why does it take so long?
There are many factors that make it difficult to get an accurate diagnosis.
For one thing, 90% of those diagnosed with Lupus are women.
Many of those women, like me, ignored symptoms for a long time because of other, more pressing, obligations – such as kids, bills, etc.
Also, does this mean that only 10% of men actually get Lupus – or that they try to play it tough and ignore symptoms until the disease has progressed to the point of needing immediate treatment?
It’s hard to know the answers to those questions.
More Than Lupus:
It’s not just Lupus, though.
1 in 3 Lupus patients also suffer from other autoimmune diseases.
So do I. In fact, I was diagnosed with Sjogren’s Syndrome years before Lupus was added.
This can make it difficult to track which symptoms are coming from which disease.
Symptoms of Lupus:
The most widely reported symptoms of lupus include:
Pain, extreme fatigue, hair loss, cognitive issues, and physical impairments that affect every facet of their lives. Many suffer from cardiovascular disease, strokes, disfiguring rashes, and painful joints. For others, there may be no visible symptoms. (source)
Of all these symptoms, 65% of patients diagnosed with Lupus say Chronic Pain is the most debilitating symptom of the disease.
Economic Impact of Lupus:
So, are these factors impacting people’s ability to work and maintain an income?
Are all those doctor’s appointments, lab tests, prescriptions, supplements, pilates memberships, holistic efforts to improve, etc., also financially impacting people with Lupus?
You betcha twice.
Here are the numbers available:
$20,000 is lost annually by each lupus patient from healthcare expenses and lost work productivity.
Women of color are 2 to 3 times more likely to be diagnosed with Lupus.
Also, several studies have shown that minority women have been reported to be diagnosed with Lupus younger, have more severe symptoms and have a higher mortality rate.
This begs the question … is it ethnic background or….
Does Health Insurance Matter?
The big elephant in the room.
Those of us on the streets, living with Lupus and talking with others who have it, too, can tell you that it does.
Let me tell you a story:
Two girls who grew up together are both having symptoms. They both go to doctors. One of them has Medicaid and the other has PPO.
One girl is diagnosed within 2 years and has been able to use natural remedies and a very low dose of Plaquenil with very little disease progression.
The other girl never gets an accurate diagnosis for over 7 years, sees dozens of doctors, is prescribed many different pain meds, hospitalized several times and told by several physicians that it’s “all in her head.”
Finally, her disease has progressed to the point of her needing a walker, medical CBD, an MRI, and potentially surgery.
One of these girls is me and one of these girls is my lifelong best friend.
But, it’s not just our story.
These types of medical discrepancies are shared time and time again.
Since we still see a discrepancy in pay and poverty with minority women – are we also seeing this Lupus discrepancy because of lower quality health care and access to medications/solutions/etc.?
It’s a good question to ask.
What Does The Future Hold?
Life expectancy used to be more compromised, but as medical advancements improve, we see an increase in general life expectancy.
Now, approximately 10-15% of people with Lupus will prematurely die due to complications from the disease.
Over the last 40 years, funding and advocacy for medical breakthroughs has continued to increase and we all continue to hope for even more in the next 40.
I know I’m on a medication that I should only take for 10 years, but where does that leave me in my 40s? We all hope for a better option by then.
Until then, we continue to fight for wellness – with every choice we make every day. This blog is my ongoing notes on what I’ve tried, recommend, and learned, as I wake up each day and stare down the bully that is Lupus.
To our health,
Great post, and so true. I’m on Arava for mine. Also initially diagnosed with Sjogren’s, Reynaud’s, Mixed-Connective Tissue Disorder, and initially misdiagnosed with Fibromyalgia. This ai disorder is hell. How do you keep your energy up? I’m 48, and went from running half marathons to complete exhaustion.
It’s really hard. I find a lot of it is a mind game. Once I accepted the reality that I was always going to be in some level of pain, then my brain switched from trying to get out of pain to learning how to cope and improve quality of life. I would be afraid to work out (I, too, was in great shape and worked out hard for most of my life) because the pain was so bad. Once I accepted that I am going to be in pain anyway, I shifted the thought too – at least I am in pain for something that is helping my body. I also have Sjogren’s and the constant eye pain can sometimes be worse than the lupus symptoms! I have a whole arsenal of dry eye things I do – maybe I’ll write about those soon. At the end of the day, you do what you can, when you can, with what you have. Hang in there, friend. Fight for your health.