‘You have some blood markers for lupus,’ the professor said, ‘and you have some symptoms for lupus, but I don’t feel comfortable diagnosing you with lupus.’
I groaned internally. I was sitting in the specialist’s office, hoping to finally have some answers for the medical circus that lived in my body. I had been living with horrible symptoms for about six years now: brain fog, bludgeoning fatigue, recurrent mouth and nose sores, bamboo nodules (a rare vocal condition caused by autoimmune disease), a host of rashes and numbness, gut issues, migraines, constant dizziness, and a one-off bout of pericarditis for good measure. Now my bloodwork had come back positive and still, no diagnosis.
The professor sitting across from me—who was lovely, by the way, and highly respected in his field—simply wasn’t confident enough to hand out a diagnosis. This is the way it often goes with lupus, and with many other varieties of autoimmune disease too. The evidence is there, lined up neatly in the bloodwork and the medical history, but diagnosis is elusive.
One of the reasons for this is there is so much overlap between autoimmune diseases. For example, in my hunt for a diagnosis, I had already considered Hashimoto’s disease, rheumatoid arthritis, chronic fatigue syndrome, IBS, fibromyalgia and Ehlers-Danlos syndrome. I thought that lupus was the most likely culprit of all of these, but without an actual medical opinion to back me up, my theory was useful only to myself. I felt alone and awash in a sea of medical terminology.
What’s so important about securing a diagnosis, I hear you ask? It opens doorways. Now that I have a lupus diagnosis, I can get access to lupus-specific medication which works. I can get anti-virals when I catch COVID-19, because the evidence says I am immunocompromised. When I present to ED, the hospital staff immediately grasp my medical risks, because it’s in my file. I can avoid certain medications that carry high risk of clotting, because my body is a walking high-risk-of-clotting factory.
What’s so important about a diagnosis? It open doorways.
And, perhaps most importantly, it gives me credibility as a patient. When I present with a new symptom, my doctor takes me seriously and doesn’t think I’m a hypochondriac or ask me if it’s ‘just anxiety’. It’s there in black and white. I am believed. I have lupus.
I am told the average time it takes to lock in a lupus diagnosis is five years. At this point in my story, I was already six years into the seemingly dead-end journey. So I left it. Then I saw a nutritionist in a wild attempt to solve my gut issues, and she wondered aloud about lupus. I dismissed her with a wave.
‘I’ve already been down that road,’ I said. ‘No go.’
‘What about a second opinion?’ she suggested. ‘There’s a great professor nearby. I can refer you if you like?’
I had forgotten one of the most important principles of being a patient: Get. A. Second. Opinion. And get it from a word-of-mouth recommendation, if at all possible. So I went to see this second professor, who was also lovely, and who was more confident than the first. He was happy to diagnose me with lupus. It took me eight years, but I finally nailed down what was wrong with me. It pays to shop around.
If you feel like something is definitely wrong but it doesn’t look like a typical medical condition (mine presented with rare symptoms initially), yet it persists or keeps recurring, or you keep developing new and weird symptoms, please please please do what I did. Get that all-important second opinion.
It might just give you the label, and the access to treatment, you sorely need.
Do you live with a chronic condition, perhaps autoimmune or otherwise? How easy was it to get a diagnosis? If you’re still searching for that elusive medical label, have you considered getting a second opinion? Share your story. Let’s have a countercultural conversation.