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6 Possible Signs You’re Misdiagnosed

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I don’t need to explain on this platform why misdiagnosis is frustrating, expensive, and even dangerous. If you know, you know. But for the ones who are in the disorienting and chaotic process of getting help, then I hope this will help you navigate. I say “getting help” a bit tongue in cheek, because sometimes it feels like getting hurt and collecting debt.

Since I have some rare conditions that can combine to cause odd problems, I want to be careful not to pass my bias on to you. I can be fearful, approaching these questions assuming the worst of my body because it’s let me down before. However, not every weird thing our body does is a red flag for a critical or rare disease. On the flip side, optimism is not always best. Sometimes the common, simple answer is not it. Sometimes we must keep pushing for a better understanding of the problem.

I’ll use an example from when I had shortness of breath that couldn’t be explained for many years. I was given more than one unhelpful diagnosis, and I didn’t realize it consciously until after life settled back down. Looking back, these were some of the signs that my diagnosis wasn’t fully accurate:

1. Being told you have symptoms you don’t.

I was first diagnosed with asthma, and I distinctly remember one appointment when a nurse and a doctor both referenced how congested I was. I had almost zero congestion. I didn’t speak up because I didn’t realize how much it mattered. If I could go back, I would politely stop them both and clarify that I did not have congestion. It may not have helped much, but then again it may have started a helpful conversation sooner.

2. Being told you don’t have symptoms you do

This one is a different beast. Having your experiences questioned or ignored is emotionally painful, stressful, scary, and deeply wearying. It’s de-motivating to seek help when your honesty has been questioned, or your self-reporting is devalued. If you’re facing this now, I know this could be irritating advice, but keep going. Keep trying. It helps to have friends (in person or online) who can listen and keep validating your experiences. Sometimes the process is legitimately confusing for both you and the doctor, and those friendly outside voices can be incredibly helpful in staying grounded in reality.

3. Being told you have improved when you haven’t.

Along the way I tried treatments that didn’t help, and was told I should be improving. At times this assumption was so big in the room I had to speak up forcefully to say that I was not improving. Do not be afraid to speak up. Errors like this were not presented to me as a confrontation — it was passive, and even unspoken. This put the burden back on me and made me feel I was creating conflict. Not fun, but it was worth it to correct these assumptions.

4. Being told you have not improved when you have.

I wish I was making this up. I had two different specialists comment on why I might be using a rescue inhaler. I said it helped me breath better. One doctor said it probably wasn’t helping, and I just imagined it was. Another said I was using it for the side effects, and it wasn’t really helping. Plot twist: later tests proved it was helping my breathing.

5. Symptoms not responding to treatment.

This was one of the biggest signs. The usual treatments that help people with asthma were only helping a little. My symptoms were both worsening and becoming more easily triggered, even though I was doing everything I knew to do. When I ended up in the ER and left without explanation for my symptoms, I knew I was justified to keep seeking better answers.

6. Being told “normal” testing means you’re fine.

Weird as it sounds, I grew to hate the word “reassuring.” Another normal test result, another note from the doctor telling me nothing more needed to be done. I tried to be grateful for all the conditions being ruled out, but many times a “good” test result was held up to me as evidence I was over-reacting to my symptoms. One way to stay on task is to ask detailed questions about what is and is not ruled out by each test. Keep questioning like a persistent toddler. The information I needed eventually came through a specialized test I would have never known to ask for.

Big disclaimer. Here’s what’s so confusing about the human body. You could experience everything on this list, and the root of the problem is not necessarily a misdiagnosis. We’re complicated. My goal is not to send you on a mystery chase, but to encourage you to not be talked out of taking your care seriously. If you have an intuition, follow it. Be thorough. Read your test results and doctor’s notes. Sometimes those details can later come together and be helpful.

I eventually learned that my breathing issues were not from a single source, but were due to several conditions. It took a combination of voice therapy (for vocal cord dysfunction), lifestyle changes, micro-managing triggers, and starting new medications to start to feel like myself again. That process took around seven years! It was not easy, and as cheesy as it sounds, the last breakthrough happened right as I was ready to give up on further answers. I am still grateful beyond words.

I know the ending of these stories is not always happy, easy, or marked by clarity. Although I didn’t get a cure, I was given treatment that helped my breathing so much it felt like a miracle. To be fair, I’ve mentioned some frustrating encounters with care providers, but I met others who were wonderful. In sharing this, I hope someone will hear my voice encouraging you to keep going, one day at a time. If there’s a chance of you gaining improvement, the only way to get it is to keep working through this difficult process.

Getty image by SDI Productions

Originally published: March 13, 2023
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