The hardest part about my Cushing’s disease journey has been recognizing its effect on my mental health.
Prior to diagnosis, life was confusing. I didn’t know why I was feeling the way I did. My symptoms were so gradual that when I told friends and family I was feeling bad, they did not believe me. Mild anxiety and depression grew into full-blown paranoia and panic attacks. I didn’t know who I was anymore, but I brushed it off.
I saw at least four doctors and described my symptoms. They told me I should go on birth control. Some thought I had polycystic ovary syndrome (PCOS).
When friends, family, and doctors wouldn’t acknowledge how horrible I felt, I began to question my sanity. Did I make up these symptoms? Thinking I had lost my mind was the scariest part of the disease. Stumped and defeated, I gave up on my health. For a while, I lost trust in doctors.
It wasn’t until I reached my breaking point that I entered my symptoms into an online symptom checker. The top result was Cushing’s disease. It is so rare that my partner at the time did not believe I had it. Cushing’s affects 10 to 15 people per million each year.
The evidence was enough for me to make an appointment with an endocrinologist. At first, my endocrinologist also thought I had PCOS. He didn’t think I looked like a textbook Cushing’s patient. I pushed him to test all my hormones and, after years of feeling crazy and being brushed off as a hypochondriac, I had a diagnosis. I felt vindicated. Everything started to make sense again.
I have a tip for patients who are having a difficult time getting doctors to believe them: Bring a photograph of yourself before you felt sick that shows the difference in your moon face and body swelling. Write down your symptoms so you do not forget anything. Have the doctor analyze anything about your health that may be feeling wrong. If you don’t feel like your concerns are being addressed, get a second opinion. Listen to what your body is telling you and not the opinions of people around you. Be your own advocate.
And whenever this disease makes you question your sanity, know that you are not crazy. It is just a symptom.
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.