Finding Love for My Ugly Disease

Welcome to Vanessa Nguyen’s “My Pretty Ugly Disease,” a new Cushing’s Disease News column.

If you look at me today, you would not know I was once a Cushing’s disease patient. The happy-go-lucky person I am now was once anxious and depressed, had acne and panic attacks, and wore a swollen body full of joint pain.

I was bullied for my weight in elementary school, so I was always self-conscious and suffered from low self-esteem. Through the years, I tried in every way to look my best, so you can imagine how having Cushing’s for years turned my world upside down.

Prior to my diagnosis, I got to the point where I hated myself for how I felt and looked. I was gaining weight rapidly and losing handfuls of hair from my head, my cheeks were swollen, and I had cystic acne all over my face.

The chemistry in my brain had changed due to hypercortisolism. The high levels of cortisol my adrenal tumor produced — more than triple the amount a normal person would have in their system — had wreaked havoc on my brain and body.

To this day, I look in the mirror and see the damage Cushing’s has done to me.

Some damage is visible: There are scars on my body and my cheeks are still a little puffy. Other scars are deeper than the eye can see — they are imprinted on my psyche. If you have Cushing’s disease, you know how deep the depression and anxiety can go.

I think the worst part was being misdiagnosed for years and feeling like I had gone crazy. I wondered whether I was imagining all of these symptoms. Nobody believed how stressed I felt. My body was in constant fight-or-flight mode.

This went on for years. I got to the point where I wanted to end my misery before it became clear that I needed to regain control of my life. I pushed to be heard by doctors and had to be my own advocate to get diagnosed and treated.

Before and after diagnosis and treatment. (Courtesy of Vanessa Nguyen)

It has been six years since I was sick. Some days, I look in the mirror and remember. On my stomach, there is a large scar near my rib cage and bellybutton from my adrenalectomy. Scar tissue formed on my inner arms from multiple blood draws. My cystic acne left scars on my face.

These scars are not pleasant to look at, but they have gotten better, and they are a reminder that I am a survivor of Cushing’s. They signify the strength I had to find within myself.

During my illness, I had to dig deep and love the sick girl who needed to heal. If not for Cushing’s, I don’t think I would have overcome my low self-esteem. In time, I also learned to separate myself from my disease. Still, a part of me wonders how I would look and feel had I not gotten sick.

I am grateful for everything that had to transpire for me to see that the little girl who was once bullied had grown up to be a warrior. I love her now.

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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 Services, and are intended to spark discussion about issues pertaining to Cushing’s disease.