Carsten Sørensen, who lives in Denmark, Europe, was diagnosed with IgG4-related disease in 2021 at age 47. He describes the emotional toll of being dismissed by doctors, the challenges of navigating siloed medical specialties, and the relief that came with finally receiving an accurate diagnosis.
Transcript
Some of the doctors said it’s all something you made up. There’s nothing wrong with you. We just give you antibiotics and everything is good. All is normal.
I’m working at a psychiatric hospital myself. I actually would believe that the mental toll that this can take — you can feel in your own body that there’s something wrong. We are not yet able to make the doctor feel what you feel, so you can feel it just as a patient, that there’s something wrong.
And if you have undergone many examinations or stuff — in the end they still haven’t found the answer you’re feeling. Or maybe even meeting a doctor who thinks — there’s nothing wrong with you if it’s just in your head.
In my case, there were several medical areas of expertise involved. They found out that I had latent tuberculosis, so I had an area of infection. Then there was a problem with the urine. The kidney. So that wasn’t on the field. And then they found out that I had the IgG4.
I had many of the medical areas involved. They don’t talk together really well. That’s something you — you have to do yourself. While you don’t actually know enough of — what’s wrong with me. And they were dying to know what’s happening, really. So it’s quite tough.
