I’m lucky. With a few notable exceptions, everything I have been diagnosed with since I was a teenager has made sense in the context of what I already had. The meningitis was a lucky guess, and the diabetes took longer than it should have, but there was no mystery in any of them. But sometimes that’s not what happens. I have spoken to several patients in the last few months who have been through the wringer before they got a correct diagnosis.
When your body starts doing something you don’t understand, it’s scary. You know something is wrong but you don’t know what it is. You may ignore it if it’s not too much of a burden (I’m looking at you, healthy people), but if it doesn’t go away, you eventually take yourself to a doctor.
A doctor who is less familiar with the pantheon of possibilities your symptoms could mean may make a diagnosis going strictly by the figurative textbook. And if they’re judging only by what you tell them and whatever tests they order, it’s possible that, despite knowing how important it is that they get it right, they still get it wrong, even if it’s a common issue. Common issues can have uncommon symptoms. Tests can have false positives and negatives. Symptoms can be the same across several conditions.
So, what to do?
Push back. Whether in the doctor’s office getting your diagnosis or at home realizing a prescribed treatment is not changing anything – or even making your symptoms worse – don’t wait. Say that it’s not working or that you don’t think the diagnosis is right. Treatments can be adjusted or changed. Additional tests can be ordered.
Do your research. Use reputable sources – The Mayo Clinic, National Institutes of Health, the Cleveland Clinic – and see if your symptoms add up to something that makes sense. No one knows your body better than you do. Don’t let someone who doesn’t know it as well make you think you’re crazy.
Shop around. If your doctor isn’t looking outside their own expectations, find someone more flexible in their thinking. Look for doctors with experience. The more experience a doctor has, the more likely they have seen complicated, unpredictable cases. Keep looking until you find one you feel is treating you, the patient, and not just the symptoms you bring.
I understand how frustrating not knowing can be. During your quest for a correct diagnosis, please remember to take care of yourself as much as you can. Manage your frustration and anger and symptoms with self-care (and a good therapist if you can). Stress makes everything worse.
Don’t keep it a secret from those closest to you. You never know who can help and how, and there is no shame in leaning on your support network when you need to. That’s why it’s there. I recently caught up with a good family friend, who had been struggling with a medical diagnosis for the last 11 months. They’ve gotten it wrong twice so far, and they are moving on with a third diagnosis (three different opinions from three different doctors in three different specialties). But the treatment leaves much to be desired, and I raised the question of whether they could have gotten it wrong again.
If that’s where you are, hang on as well as you can and keep advocating for yourself. You’ll get there.