What dreaded doctor appointment anxiety feels like and how I respond

I’m not sure if this is a universal sentiment in the chronically ill community, but it seems like every time I have a doctor appointment, it consumes my entire day.

I’ll sit at the computer, waiting for the virtual appointment to start, knowing that it won’t come for several more hours. My anxiety is so strong that my stomach is deeply tied in knots, and I can’t possibly consider eating. The minutes go by so slowly that it feels like a million years between them. I try to distract myself with funny shows or good music, but the anxious feelings always make their way back to me, interrupting anything I want to do that day.

So the day is dedicated to the doctor. I review my MRI reports a dozen times, make sure I have all my questions written down, and line up my medications so I can discuss any side effects.

Why is it that doctor appointments make me feel this way? What am I so scared of?

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November 2, 2018 Columns by Catarina Louro-Matos

How I Dealt with Cushing’s Disease Before, During, and After Diagnosis

Around we go

Of course, I know the answer. My disease is cyclic Cushing’s disease, which is incredibly rare. Before I was officially diagnosed with it, I was told it was a million other things: Hashimoto’s disease, late-onset congenital adrenal hyperplasia, ovarian cancer. I went through rigorous testing, all with the hope that we had finally figured out what was wrong, only to be told, “I’m sorry. We were wrong. We don’t know what it is.”

I thought that once we narrowed it down, the answer would be clearer, but it only got more confusing from there.

It’s anxiety. It’s depression. It’s dehydration. It’s because you eat too much. It’s because you’re not eating enough. It’s because you’re overweight. It’s because of your bad posture. No wait, it’s because you’re clumsy. Oh, I know! It’s because you don’t work out enough.

Soon after, I had several medicinal trial periods that we hoped would alleviate my ever-growing symptoms. Endocrinologists sent me to neurologists, who sent me to ophthalmologists, who sent me to nutritionists, who sent me to gynecologists, who sent me back to endocrinologists. I tried 10 different diets and a hundred different medications, but nothing helped. I just continued to get worse.

Around and around and around we went. I saw so many different doctors with varying ideas about what was going on.

Advocating for myself

Over time, I had to learn how to advocate for myself and stand up and be vocal about everything I was feeling. I had to put together binders of information, take constant pictures, and highlight everything I could to prove I was sick.

Even when I finally found an amazing team of doctors, there were moments when things went wrong. There was the day I was told that my case was complicated and we couldn’t do surgery this time around. There was the day I was told fertility could be harder for me and there wasn’t anything I could do about it. There was the day I was told that even though I had surgery to remove a pituitary tumor in 2020, another one had formed, and I wasn’t cured.

Today, managing my health is an ongoing process. There’s less bad news and more maintenance. We increase my medication doses, have bloodwork done every three months, and do continuous scans to monitor my pituitary tumor. However, in the back of my mind, all of those past appointments are still with me every time my doctor calls.

So when I’m waiting for my doctor appointment, all of those feelings come back. I’m still scared an appointment won’t go my way. What news will I receive? Has something gotten worse? What exactly does that high test result mean?

If this happens to you, do what I do: Embrace it, celebrate the good moments, take a thousand deep breaths, and remember that you’re not alone. People feel the same way that you do all the time. Hopefully, we’ll all be able to relax just a little bit more when the day of the appointment comes.

How do you get past the anxiety of doctor appointments? Please share 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.