Being prepared is the best remedy for doctor’s appointment anxiety

I’m sure many of us have experienced doctor’s appointment anxiety, especially ahead of a diagnosis. I’ve found myself staring blankly at doctors when they’ve asked me what my symptoms are. It’s not that I don’t have any; it’s that I was so desperate to be diagnosed and get treatment that I was paralyzed with fear.

I’ve found the best way to counteract this anxiety is to be as prepared as possible for an appointment.

For my first meeting with my cyclical Cushing’s disease specialist ahead of my diagnosis, I had an entire binder filled with proof of my illness.

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The first section contained test results. I included all of my hormone testing, specifically testosterone, growth hormone, ACTH, DHEA sulfate, and cortisol tests. I also highlighted any result that was off so it was easy to find.

Next, I had proof of being tested for illnesses I don’t have. For example, congenital adrenal hyperplasia runs in my family, so I was tested for it. I have proof in my binder that I don’t have it, mostly to avoid repeat testing. I also have my thyroid test results to show that I don’t have Hashimoto’s disease, and scans of my uterus to demonstrate that I don’t have uterine cancer.

Here’s the tough part: I do have polycystic ovarian syndrome (PCOS). Cushing’s disease is often misdiagnosed as PCOS, and the most common medical gaslighting I’ve dealt with was, “It’s just PCOS. Nothing else is wrong.” For this reason, I brought a lot of before and afters when I saw my specialist. I wanted to show that I was able to manage my PCOS and that my symptoms weren’t related to it. I showed side-by-side labs, side-by-side scans of my ovaries, and side-by-side photos of my disease progression.

I also provided the doctor with a long list of symptoms, with pictures that showcased the visible ones. For example, I had multiple photos that showed my striae (stretch marks), “buffalo hump” (fat buildup between the shoulder blades), and “moon face” (fat buildup in the face). I even had pictures of cuts with dates on them to show how slowly they were healing.

Having all of this made it easy for my doctor to believe me and offer testing. I’m convinced it’s a big reason I was diagnosed.

Getting down to business

Today, I have to meet with my specialist every three months. The anxiety around the appointments has diminished, but it hasn’t disappeared entirely.

My visits are short, so it’s important to be as specific as possible and prioritize what I discuss with my doctor. I have to take lab results every three months, so I print them out and we start by reviewing them at every appointment. I talk about anything that alarms me or that I should be worried about.

Then I go over any symptoms that are flaring. Some examples have been my hair falling out, insomnia, or having a bad fall.

To prepare for the appointment, I’ll write down anything I want to bring up. I’ll also review it with my partner, who sees me more than anyone else and might notice things that I’ve missed.

From there, we’ll talk about possible medication changes and any concerns I might have. The appointment takes about 15 minutes and it’s all I’ll get for three months. The important thing is to be honest and prepared.

These appointments can be incredibly intimidating, but they are my time. As patients, we owe it to ourselves to make the most of it and to be heard. And we deserve to have someone who cares enough to listen.

Do you have doctor’s appointment anxiety? Let me know in the comments below! You can also follow my journey on TikTok and YouTube.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.