The power of community has been a silver lining of my Cushing’s journey
For columnist Jessica Bracy, connecting with others has been a huge help
About three years ago, my body began to change. Movement became more difficult and running long distances was increasingly painful. I watched as the scale slowly ticked upward, purple marks started showing up on my stomach, and my face become noticeably round. I had no idea what was going on or what to do about it.
As these symptoms progressed, I began to keep a mental log of them. In search of answers, I turned to the internet. While scouring Google, a recurring theme kept showing up: Cushing’s disease.
As I read more about Cushing’s online, it didn’t seem plausible that I would have it, as the condition is considered rare. However, the idea never left my mind.
Looking for answers and finding community
Continuing to search for answers, I reached out to people with confirmed Cushing’s diagnoses on social media. These folks showed me unconditional kindness and support, even encouraging me to join a Cushing’s disease support group on Facebook.
I hesitated at first, as I didn’t have a confirmed diagnosis. Many doctors had brushed me off, telling me I simply needed to manage my diet and exercise more. I was worried that this would happen again.
With a leap of courage, I decided to join. Through this group I was able to find exceptional doctors and meet others with the disease. I no longer felt alone, and I even cultivated some amazing friendships.
Finding a silver lining
Having a rare disease can feel very isolating, but social media has the power to change that. I’ve met people from all over the world who have Cushing’s. For me, it has truly helped to be able to talk with others who understand the struggles this disease presents.
Due to the complexity of Cushing’s disease, it can take years to obtain a diagnosis. I’m fortunate that it only took me three years, and I credit that to the power of this community. They were there for me when I truly felt like giving up.
Having Cushing’s disease comes with significant challenges, but having such a supportive community to help me through it has been a silver lining.
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.
Jessica, Thank you for sharing your story. I too discovered that I had Cushing after scouring the internet. It took me 7 years to reach a diagnosis. I was thrilled to find the CSRF as a resource and support. It is one thing to speak to a doctor but another to be in contact with fellow patients for support, humor, education, and resources.
Take Care! Sal