Living with an invisible disability can make the path to diagnosis long and challenging. In this interview, Julia shares her experience of being diagnosed with multiple conditions with invisible disabilities, including Vasovagal Syncope, Narcolepsy, Supraventricular Tachycardia (SVT), Antiphospholipid Syndrome (APS), and Lupus.
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When Julia began preparing for a career as a federal police officer in Brazil, she never imagined her dream would unravel—not because of lack of effort, but because of her own body.
“In 2021, I was training every day, studying hard, doing everything right,” she recalls. “But one day after the gym, I passed out in the car. I thought it was just my usual low blood pressure. But then it happened again. And again.”
Diagnosis 1: Vasovagal Syncope – When Emotions Turn the Lights Off
After repeated fainting episodes, a cardiologist ordered a tilt table test, which simulates the position changes that can trigger fainting. Julia was diagnosed with Vasovagal Syncope, a condition involving the vagus nerve, which can cause sudden drops in heart rate and blood pressure leading to fainting.
“It can happen when it’s too hot, when standing too long, or when feeling overwhelmed in a crowd,” Julia explains. “The doctor told me I had to let go of my dream job. That was devastating.” To avoid the episodes Julia focuses on keeping herself hydrated to help with blood circulation.
Vasovagal Syncope is the most common cause of fainting, and while often benign, it can be disruptive and frightening. It’s considered an invisible disability—those who live with it may look completely healthy while struggling with daily limitations.
Diagnosis 2: Narcolepsy Type 1 – The Sleepiness That Wasn’t Laziness
Julia tried to pivot, focusing on a new career that was more administrative and less physically demanding. But then the overwhelming sleepiness began.
“I would wake up just to eat breakfast and then go back to sleep for most of the day. I wasn’t depressed, I wanted to do things. I just couldn’t.”
She saw a neurologist who ordered a sleep study and eventually a spinal tap, which confirmed a new diagnosis for Julia: narcolepsy type 1 with cataplexy. Narcolepsy is a neurological disorder that affects the brain’s ability to regulate sleep-wake cycles. Type 1 includes sudden loss of muscle tone triggered by emotions.
“I always thought I was just someone who liked to sleep. People called me lazy. But it was narcolepsy. My body doesn’t produce hypocretin, the hormone that keeps you awake.”
Narcolepsy affects about 1 in 2,000 people and is often underdiagnosed or mistaken for depression or laziness—again, an invisible condition with life-altering effects.
Julia takes oral medication daily so she can function without the need to take naps. “With medication, I felt like I was alive again. I could focus. I could be present with my friends.”
Diagnosis 3: Supraventricular Tachycardia (SVT) – The Racing Heart Misread as Anxiety
Just as Julia was regaining control, a new problem emerged.
“I was teaching ballet when my heart suddenly raced to 210 beats per minute. I thought I was having an allergic reaction.”
After trying to dismiss the symptoms as anxiety, she eventually returned to her cardiologist and underwent an electrophysiology study. The diagnosis: Supraventricular Tachycardia (SVT), a type of arrhythmia where electrical signals in the upper chambers of the heart misfire.
“I underwent a cardiac ablation. And suddenly, I could run without chest pain. For so long, I thought I just couldn’t breathe well while running. But it turns out that all along, it was my heart.”
SVT can affect anyone and may cause palpitations, dizziness, or even fainting. It’s treatable—often curable—with procedures like ablation. Before treatment, Julia’s symptoms were invisible to others, easily mistaken for nerves or anxiety.
Diagnosis 4: Lupus – The Rash That Wasn’t Just Skin Deep
Next came the heaviest diagnosis of all.
“I always had rashes on my face and neck. I thought they were just pimples. But my labs showed I had lupus.”
Systemic Lupus Erythematosus (SLE) is an autoimmune disease where the immune system attacks healthy tissues, causing inflammation throughout the body. Common symptoms include fatigue, joint pain, skin rashes, and more serious organ involvement.
“I had to take steroids for two years to get it into remission. It was the hardest to accept. Lupus is aggressive if you don’t treat it early. It was a race against time.”
Lupus disproportionately affects women, especially in their childbearing years. Like many autoimmune diseases, or invisible disabilities, it’s often misunderstood or dismissed, especially when the symptoms, like fatigue or rashes, aren’t outwardly dramatic.
Diagnosis 5: Antiphospholipid Syndrome (APS) – The Clotting Condition That Alters the Future
Further blood tests revealed antiphospholipid syndrome (APS), an autoimmune disorder where the body mistakenly attacks certain proteins in the blood, leading to abnormal clotting.
“I take aspirin every day now. APS can cause catastrophic thrombosis. For women, it’s a hidden cause of miscarriage. So even though I’m not ready to have children yet, I must think about it now.”
APS is often underdiagnosed until serious complications occur—miscarriage, stroke, or deep vein thrombosis. For Julia, it added another layer of vigilance to her daily life: compression socks during flights, extra planning before traveling, and frequent bloodwork.
Respect Invisible Disabilities: Seeing the Whole Person, Not Just the Parts
“I spent so much time thinking things were just quirks of my personality” Julia reflects. “The red spots? Lupus. The sleepiness? Narcolepsy. The chest pain? SVT. The fainting? Syncope.”
What’s striking about Julia’s story is how easily each symptom could have been dismissed—or was dismissed—until a crisis forced action.
“When doctors only look at one part of you, they miss the bigger picture. That’s why I am telling everyone now: you need a team. A cardiologist, a neurologist, a rheumatologist. Someone must see you as a whole person.”
Julia also recalls a painful moment that captures the burden of living with an invisible illness. While using an accessible checkout line at a grocery store—something she depends on due to her risk of passing out if she stands too long—a woman questioned her presence in the line and flagged down an employee.
“She looked at me and assumed I didn’t belong because I wasn’t in a wheelchair” Julia says. To defend herself, she reluctantly showed the woman her medical documentation. “I have a disability, too” she told her. “Just because you can’t see it doesn’t mean it’s not real.”
This experience underscores a broader issue: people often equate disability with visible markers like mobility aids, overlooking the many who manage serious health conditions in silence. “It’s like you constantly have to prove yourself, to explain why you deserve accommodation” Julia says. “But I shouldn’t have to disclose my diagnosis to justify my needs.”
A Circle of Support for Invisible Disabilities
While Julia’s health journey has often felt isolating, she’s never had to face it alone. Her fiancé has been her steady anchor, learning alongside her, accompanying her to appointments, and offering unwavering emotional support—especially on the days when her energy is drained or her symptoms flare.
Her close friends have also become vital allies, helping normalise accommodations and checking in often. “They don’t treat me like I’m fragile, but they respect my limits. That balance means everything” she says. This tight-knit network has played a crucial role in helping Julia navigate both the visible and invisible challenges of chronic illness.
Raising Awareness for Invisible Disabilities
Julia has now embraced advocacy, using her story to raise awareness of invisible disabilities—conditions that don’t show outwardly but deeply impact daily life.
“People think you’re lazy, too sensitive, overdramatic. Especially as women, we’re told it’s just our hormones or stress. But if something feels off, it probably is.”
Julia’s advice to others is to persevere and advocate for yourself, “Go to the doctor. Ask for tests. Especially autoimmune panels. And don’t stop until you have answers.”
She’s learned to trust herself and advocate for her own care—because behind every symptom is a story, and often, a diagnosis that’s just waiting to be uncovered.
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1 comment
My story is much like yours, mental disabilities, stage four cancer, type 1 diabeties. Now I feel the worst I ever have even through chemo…I go to doctors and request my own tests. Go over my own tests results ask for different ones. Before cancer diagnosis I was to ER departments several times and then sent home. Finally my feet blew up with edema ..a physical symptom..and yes stage four cancer…which I was able to diagnose myself before biopsy. This new extreme fatigue, muscle weakness, shortness of breath, all day sleeping has taken over my life. Doctors can’t figure it out I guess. I’ve been told depression, not waking up same time every day, all sorts of things I disagree with. Good for you to stand up and fight for diagnosis. It harder then one would think.
1 comment
My story is much like yours, mental disabilities, stage four cancer, type 1 diabeties. Now I feel the worst I ever have even through chemo…I go to doctors and request my own tests. Go over my own tests results ask for different ones. Before cancer diagnosis I was to ER departments several times and then sent home. Finally my feet blew up with edema ..a physical symptom..and yes stage four cancer…which I was able to diagnose myself before biopsy. This new extreme fatigue, muscle weakness, shortness of breath, all day sleeping has taken over my life. Doctors can’t figure it out I guess. I’ve been told depression, not waking up same time every day, all sorts of things I disagree with. Good for you to stand up and fight for diagnosis. It harder then one would think.
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