I Found the Support I Needed in Online Cushing’s Communities

When my Cushing’s symptoms first appeared, I thought they were due to a virus and I’d only be out of commission for about a week. When a week turned into several months, I began to wonder if something else was going on.

I thought that maybe the symptoms were due to my heavy college schedule or a lack of sleep. I took some small steps to change my routine and prioritize sleep, but the symptoms continued to worsen. At that point, I realized I should see a doctor.

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The doctor and I initially suspected that my symptoms might be related to vitamin deficiency, but the results from a test I had didn’t provide clear answers.

I had thought that going to the doctor would provide me with answers, but instead, I was left with only more questions. My doctor didn’t know how to help me. It was suggested that perhaps my symptoms were caused by stress or a lack of sleep.

While I knew something was wrong, I just couldn’t put the pieces together. No one could relate to what I was feeling or going through. I felt like a burden. People told me I looked good when I felt at my worst. No one was truly hearing me, and what I needed was someone to listen.

I wanted nothing more than to connect with people who understood what I was going through. So, the first thing I did was turn to the internet. I wanted to learn everything I could about my symptoms, and the steps I could take to find the answers I knew were out there.

I remembered that during one appointment, my doctor said my symptoms sounded like they could be related to an adrenal issue. I didn’t look like I had that diagnosis, though, so the doctor didn’t pursue it. But from that tiny piece of information, I decided to research further.

I came across Cushing’s disease in my search and decided to look into that community to see if they might provide some guidance. At that point, I didn’t think I had Cushing’s because it was so rare. Instead, I thought they might be able to point me in the direction of someone who could help me.

As a millennial, I was comfortable navigating online forums and groups, which I’d been doing since middle school. I’ve often found peer support and connection through the internet, particularly with the evolution of social media. As a teenager, I was diagnosed with endometriosis, and the internet helped me to understand how to advocate for myself.

Online Cushing’s communities have helped me to learn not only more about my illness, but also myself. Connecting with other patients has empowered me to advocate for my needs. I’ve connected with a community whose members I can lean on for support and who provide me hope without judgment. In these spaces, I can be myself and discuss things I wasn’t comfortable talking about before with anyone else. For the first time, I felt heard and supported.

There is so much value in being heard when dealing with a complex invisible illness. When I first joined one of the online Cushing’s communities, I could read posts as an observer and take in the information. I eventually worked up the courage to post about myself and ask what others might recommend for me.

I wasn’t exactly sure what would come from that post, but I was met with validation and support. My concerns were taken seriously, and I was given resources to help me navigate my situation and information about the testing process for Cushing’s disease.

I think what I was truly looking for was validation, as I understood that no one in the group could provide me with a definitive answer, nor were they my doctor. I was struggling so much and starting to believe that perhaps it really was all in my head.

Members of these online Cushing’s communities helped empower me to reach out for a new consultation by giving me the validation I needed. They convinced me that I didn’t have to live like that. They truly understood what I was going through, because many of them had similar experiences navigating the medical system. Many also faced delayed diagnoses.

Although we were strangers, they supported me through the most difficult period of my life. They helped me to identify the next steps I should take. They shared knowledge and resources I didn’t know existed. They listened to me, and they heard me.

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.