Erin can’t recall a time in her life when she wasn’t sick. Since the age of four, she has had an endless succession of infections, sinusitis, bronchitis, urinary tract infections, MRSA…her list goes on and on.
Over the course of 23 years, she’s seen more than 100 doctors and specialists trying to get a clear vision of why she is constantly ill in addition to infections, constantly nauseous, in pain, and generally miserable.
Erin was misdiagnosed on several occasions. She was told she had fibromyalgia, or chronic mono, among other things. Doctors even accused her of being a “drug seeker” or being mentally ill because they could find nothing wrong. She says with irony, “Apparently you can fake having such severe infections that they require IV antibiotics, for which I eventually had to have a permanent chest port installed.” She further explains that she wished many times that a doctor would live in her body for just a week to feel her pain.
When Erin was 27 years old, her medical team referred her to an infectious disease specialist. This doctor tested her blood levels for immunoglobulin, what the body produces to fight infection and make antibodies. The results showed her immunoglobulin levels were extremely low.
Finally, she had the diagnosis she’d been searching for throughout her life: Primary Immune Deficiency Disease, specifically common variable immune deficiency, or CVID. Despite its name, only about 6,000 CVID patients live in the United States, and there are less than a quarter of a million worldwide.
When she was first diagnosed, Erin felt relief, but also fear and isolation. She didn’t know anyone else who had CVID, but she found several support groups through social media and through the Immune Deficiency Foundation. When she heard other people’s stories, like the one about a runner who wouldn’t quit, she knew she had to pull herself out of the emotional pit she’d sunk into and not let the disease define her. She quotes author Viktor E. Frankl who said, “Everything can be taken from a man but one thing: the last of the human freedoms, to choose one’s attitude in any given set of circumstances.”
Erin admits it’s hard to maintain a positive attitude when she learns of yet another member of her online support group passing from CVID or related complications, but she doesn’t let herself dwell in the negative for too long. She says, “Living with CVID is about learning to dance in the rain, and laugh in the face of the storm. Dance in the rain and laugh at the storm…and if that gets too hard, then at least rage against the storm – but never, ever, let it drown you.”
