Since I began my support community, Crush Cushing’s, I’ve gotten a lot of messages from individuals asking what they can do to ensure a doctor takes them seriously enough to test for Cushing’s disease. Sometimes meeting with several endocrinologists is necessary before you meet one who believes Cushing’s is a legitimate, human disease. Seriously! It’s 2018.
So what exactly can you do to help yourself on the journey to a possible Cushing’s diagnosis? Be prepared to fight for yourself. You are your main advocate, and you need to prepare. That means researching what you’re trying to find a diagnosis for.
One thing I’ve learned through my experience with Cushing’s disease is that it isn’t as black-and-white as some medical experts make it out to be — many I’ve spoken to have had doctors express this to them. They’re fully aware of its complexity.
This disease is highly complex, and there are differences between individuals. Medical students usually study “textbook Cushing’s” — a couple of variations of Cushing’s disease — for very few hours. Since it is “rare,” a lot of doctors don’t usually see it in their practice, so they continue that “complexity” rhetoric. Definitely be prepared for that.
Take photos. Photos are so important. Gather photos from before the physical changes, then take photos of yourself once a month. These can be photos of your facial changes (red cheeks, acne, facial hair growth), the buffalo hump on your back, abdominal weight gain, and stretch marks.
My biggest piece of advice: DOCUMENT EVERYTHING! Keep a journal about how you feel each day. Your mood and its fluctuations. Your digestion. What you’ve eaten. Your exercises. Quality and length of sleep.
I know this may sound insanely obsessive, so if this is all too much for you, do what you can without harming your mental health in the process. You know yourself best. I think journaling is more important than taking photos while chasing a diagnosis. I say this because it is easy to show an older photo of yourself and then present your current physical self. But with your eating habits and exercise, it’s harder to see with the naked eye — impossible, actually.
You might see your doctors as superheroes, but you also need to remember that they are humans. The more information you have to help guide them, the better. You also give the ones who are a little meaner a lot less reason to shut you down!
Also, be sure to find beauty in each day, find positives. I know that sounds really difficult — some would say impossible. It isn’t, though, and it honestly makes getting through your days a lot smoother.
Lastly, don’t fight how you emotionally feel. I found fighting my emotions made me feel worse. Finding beauty and embracing bad emotions sounds like conflicting advice, but there is always room to find at least three things a day to appreciate even when you’re sad or angry.
Are you someone who already got a diagnosis? What did you do to make the rough days a little easier? If you’re waiting to find answers, what are you doing?
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 endometriosis.