I Am…Between Stable and Well
A space most lupus patients know well lies between what the labs say and what the body knows. For Lupus Awareness Month, the Smart Patients lupus and autoimmune communities share what it actually looks like to live with a disease that hides in plain sight.
Lupus is not a disease that announces itself clearly. This is why it’s so challenging to get a diagnosis.1 By the time that diagnosis arrives, many patients have already crossed off other explanations: hormones, anxiety, normal aging.
"It took ten years to get a diagnosis. After that, every time I show up with something new, I am bracing for them to tell me it's nothing."
For women, there is an additional layer of frustration. Autoimmune symptoms and hormonal symptoms overlap so one is perpetually mistaken for the other.
"I was so concerned that once I hit menopause everything would be chalked up to that."
"That is why my symptoms were blown off in my 40s before I was diagnosed. I was told it was just my hormones."
Even after diagnosis, the disease resists easy measurement.2
"My labs are fine. My SLEDAI is low. I am still exhausted to the point of not being able to function. There is no place for that on the assessment form."
The numbers differ from what the body knows.
Most people manage lupus alongside other conditions, making it hard to discern which one is causing symptoms.3
"I have lupus. I have Sjögren's. I have Hashimoto's. I do not experience them separately. I experience them as a mixed bag that hits me in different ways on different days."
Often the doctors are just as frustrated.
"The rheumatologist wiped his hands of me and stated I was too complex for him."
"He told me I was too complex for him. I am still trying to figure out what I am supposed to do with that."
This is why peer support matters so much. When you have been dismissed, misdiagnosed, and told your disease is stable while your body says otherwise, it helps to hear from people who understand — and who refuse to stop pushing.
"Am I crazy?"
"No. Not crazy. I agree that years of pain and not being heard can impact your personality. How can it not?"
Some people give up. Others don't.
"Some of us are extra spicy and make pests out of ourselves until a doctor listens to us."
"I just press forward as much as I can every day."
Every quote in this story comes from a real member of the Smart Patients lupus community, shared in conversation with other patients. What these voices describe is consistent with what peer-reviewed research and patient registry data show: lupus is hard to diagnose, hard to measure, and rarely experienced alone. Smart Patients works with researchers, clinicians, and educators to make sure patient experience informs how the disease is taught, treated, and studied.
Footnotes
1 Sixty-three percent of patients in the Autoimmune Registry (https://www.autoimmuneregistry.org/) reported having been misdiagnosed prior to receiving an SLE diagnosis, with the most prevalent prior misdiagnoses being depression or anxiety (65%) and fibromyalgia (59%).
2 Peer-reviewed research has shown that fatigue in SLE does not correlate with clinician-assessed disease activity measures (Elefante et al., 2020), and that patient-reported physical function independently predicts mortality even after controlling for disease activity (Azizoddin et al., 2019).
3 Only 16% of confirmed SLE patients in the Autoimmune Registry have SLE as their sole autoimmune diagnosis; approximately 30% have five or more confirmed autoimmune diseases.
If you or someone you love is living with lupus or an overlapping autoimmune condition, the conversation is already happening on Smart Patients.