How I learned to be a self-advocate during my diagnostic journey

Social workers like me learn the importance of advocacy. We advocate for our clients and strive to help them improve their lives in one way or another.

Although we advocate for others, we sometimes forget to advocate for ourselves. When I started experiencing symptoms of Cushing’s disease, I realized just how important self-advocacy was as I spent years seeking answers.

I suspected I might have Cushing’s and talked with many doctors about it, asking them to test me. They often agreed, since my symptom presentation aligned with that of the disease. Yet they’d only administer a dexamethasone suppression test. When that came back negative for Cushing’s, I was told that the disease wasn’t a concern for me. Instead, I was advised to modify my diet and exercise to alleviate my symptoms.

But as those symptoms increased — including weight gain, buffalo hump, striae, moon face, fatigue, and bone pain — I asked my general practitioner (GP) to refer me to an endocrinologist. My GP placed this referral, but it was rejected because of my local medical facility’s stringent gatekeeping policies.

Recommended Reading

February 17, 2023 News by Marisa Wexler, MS

Study compares tools for Cushing’s diagnosis, tumor localization

Thinking outside the box and looking out of state

My symptoms continued to progress, and I didn’t want to give up on finding answers. I turned to my support group, which helped me find a multitude of doctors who specialize in treating Cushing’s. One of those allowed patients to self-refer and pay out of pocket. Since that was easy for me, I gave it a go.

I spent hours drafting a document to show this doctor everything: before-and-after photos, symptom-specific photos, lab results, and a narrative that described my symptoms, demonstrating how each started and developed. This 25-page document gave my doctor a thorough understanding of how my body was changing and what I was going through.

This doctor helped me understand that my symptom presentation aligned with cyclic Cushing’s disease, as opposed to florid Cushing’s disease. With cyclic Cushing’s, your cortisol levels are sometimes high and sometimes normal, which makes the condition difficult to diagnose. I also learned that multiple tests were absolutely critical to allow us to see a complete picture of what was going on.

Over the course of a year after seeing this out-of-state doctor, I completed eight 24-hour urine collections, eight midnight saliva collections, a ketoconazole drug trial, two MRIs, and one CT scan. Completing all of these tests took significant time and energy. The idea that I might feel better afterward helped motivate me to get them done.

After completing all of them, we finally got some answers. Multiple tests came back showing high cortisol, though some showed normal. My MRI, meanwhile, revealed a 3 mm tumor on the right side of my pituitary gland.

After I was referred to surgery, I completed an inferior petrosal sinus sampling test to ensure that the tumor on my pituitary gland was in fact the cause of my Cushing’s disease. Finally, I was able to get surgery and start recovery.

Stepping back and looking at this journey in hindsight is awe-inspiring. When I was in the thick of it, I just had to keep going. I had to keep pushing forward until answers were found and solutions were within reach.

I don’t think I realized how much advocating I had to do to get to where I am now. As singer Bob Marley once said, “You never know how strong you are until being strong is your only choice.”

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.