Why Did I Have to Wait 20 Painful Years for a Diagnosis?

Did you ever have to wait a long time for a diagnosis? My recent diagnosis took 20 years to figure out.

Why Reading Books Can Unravel Mysteries

Costochondritis.

Pericarditis.

Unexplained rashes.

Incredible chest pain.

Pleurisy.

Fevers and swelling.

Joint pain, but no arthritis.

Come-and-go food allergies.

Chest pain (but a super-healthy heart).

Weakness in my hand and arm.

For almost twenty years, I’ve experienced these symptoms. Sometimes individually, sometimes three or more at once. I’ve been scanned, electrocardiogrammed, stress tested, prodded, tapped, and historied. Each time, the diagnosis ended up inconclusive (or what the doctors called a ‘garbage diagnosis’).

Each time the pain or problem attacked me I would have to wait to see someone. And when I did get in to see a doctor, they would often act as if I had faked the symptoms in search of prescription pain pills. I don’t do pain meds of any kind unless I take Tylenol post-surgery.

Sometimes, I would have to wait so long to get in to see a specialist, the symptoms had disappeared. The specialist would refer me to another type of doctor, who also couldn’t figure things out. And so, I lived with the occasional intense bouts of pain, the weird symptoms, and figured I’d never know.

And then I read The Body Keeps the Score, by Bessel van der Kolk, M.D. His research and interactions with patients as a psychiatrist have shown how our bodies can change because of trauma. Van der Kolk makes it clear trauma comes in all different shapes and sizes—physical, emotional, first-hand experience, or trauma from a loved one’s trauma.

I didn’t experience physical trauma 20 years ago, but I did experience caregiver trauma (emotional) while my husband struggled through a catastrophic cancer diagnosis.

My mysterious pains, fevers, and complications surfaced within a year of his miraculous recovery.

So Why Did I Have to Wait so Long?

While reading the book, I came across a reference to diseases caused by trauma. The word Lupus jumped out at me. For the past four years, I’ve suspected the culprit to my traveling joint pain, chest pain, weakness, and swelling might be Lupus or arthritis. But with no close family members who suffered from the disease, I figured I had no reason to have it.

At one point, I even visited a specialist at the Mayo Clinic in Phoenix. When I questioned her about arthritis, she informed me I was too flexible. A few years later, an urgent care physician ordered a few tests and told me to take the results to my primary care doctor.

I did. He glanced at the test results and prescribed a pain killer. After filling the prescription and reading the educational material, I dumped the pills down the toilet. I didn’t want a pain killer, I wanted answers. I would have to wait another five years before I got them.

Finding a rheumatologist in a sparsely populated area seemed impossible, so I looked closer to a retirement population and found one in February. After a slew of tests, I went back for the results on Monday.

Sure enough, my suspicions proved correct. I have Systemic Lupus Erythematosus (SLE). For the past six years, I’ve managed to avoid major flair-ups through healthier eating, stress management, and getting more hours of sleep each night.

According to the CDC, many people have to wait years for a diagnosis because Lupus doesn’t affect everyone the same way. Specialists must run a battery of tests, take a detailed patient history, and perform a physical examination. It took a rheumatologist to put all the pieces of my medical puzzle together and ask all the right questions to figure out the correct diagnosis.

Do I Like Waiting?

No, I don’t like to wait. But I know God is faithful and will give me answers in his time. For now, I rejoice because I have a diagnosis (I don’t enjoy being the patient doctors pat on the head and prescribe pain pills to). I have a medication that will allow me to travel to exotic places and not get malaria—and it will keep my autoimmune system in line, so it stops attacking me. Best of all? An anti-inflammatory diet includes yummy things like turmeric, cayenne pepper (pretty much all peppers), mushrooms, berries, veggies, and chocolate.

I’m still learning more about Lupus, and I’d love to hear from you if you have it. What challenges do you face? What works best to control your flare-ups? I’d also love to hear if you had to wait for a diagnosis for years and years.

Do you ever feel like a medical mystery? It took 20 years before a doctor finally found a diagnosis for me. #lupus #SLE #oneword2022 Click To Tweet