Those with chronic illness are more connected than you might think

When I was diagnosed with Cushing’s disease, I felt completely alone, like I was on an island surrounded by raging waves I couldn’t possibly swim through. In response, I built a community of understanding people, via this column and on social media, as well as by meeting up with local Cushing’s disease friends.

At first, I assumed that no one other than people with Cushing’s disease could understand what I was going through. However, when I shared social media posts about my insomnia, it resonated with a larger audience. People reached out to me for advice regarding their own insomnia and told me what had worked for them. It changed my entire outlook when I realized there was a larger community to unlock.

Because of that, I’ve expanded my community into other illnesses, partly because of my work here at Bionews, the parent company of this website. One thing I’ve noticed is that my “island” was a figment of my imagination. In reality, we’re a web of people who’ve all had similar experiences.

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Yes, Cushing’s disease is rare, so there are several benefits to speaking with others who have it. We can discuss symptoms, testing, doctors, and day-to-day activities with people who can relate. But I’ve also discovered that people with other chronic illnesses have similar experiences. Most of us have probably been gaslit by doctors at some point, and several of us have been misdiagnosed. Since there are often overlapping symptoms with various conditions, it’s good to have discussions about how they affect us day to day.

For example, I started having dizzy spells, which isn’t very common in the Cushing’s community. But my expanded community taught me to put ice on my neck, drink sugar water, and lie down. Now I’ve got a handle on it.

But it’s not just symptoms that connect us. We all know what MRIs, CT scans, and ultrasounds are. We overlap on mobility aids, pain relief, and even reactions from family and friends. I’m in the process of getting a new mobility aid thanks to one of my new chronically ill friends.

More work to do

However, I still think that our various chronic illness communities are still too disconnected, and we’d be stronger and have more support if we joined together.

We’re stronger in larger numbers. If you’re having doubts about joining the conversation, believe me, you’re sick enough, disabled enough, or different enough to put yourself out there and become part of this larger community.

In fact, by building a community for Cushing’s disease, I’ve been able to lift others up. On social media, I highlight the stories of people with other illnesses and disabilities and share connections with people who feel lonely. Now that I have several groups, when someone with disabilities needs crowdfunding, I can reach out to several people.

I’ve been able to crowdfund clothing and blanket donations, help people get diagnosed and connect with doctors, and even find temporary housing.

Those of us with chronic illnesses and disabilities are both a community and a culture. There’s so much beauty to be found in widespread understanding and acceptance. Therefore, I commit to expanding our community and connecting with others who share similar experiences. I hope you will, too.

You can also follow my journey on TikTok and YouTube.

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.