Help from my community gets me through difficult health periods

Since my diagnosis with Cushing’s disease in 2020, I’ve felt more alone than ever. My friends and family are very loving, and they want to understand, but I’ve needed to connect with people who have been through the same health challenges. Finding others who are chronically ill has been imperative for my mental health.

I’ve met incredible people through my work at Bionews, the publisher of this website, and on social media. Not only have they supported me in difficult times, but they’ve also taught me so much. I became chronically ill in 2018, and this world is still new to me. Adjusting to my mobility aids and learning to take all of my medications has been overwhelming. The tips I’ve learned from my community have been instrumental in helping me navigate life with Cushing’s.

Asking for help

I have difficulty asking others for help, especially when our relationship feels uneven. I sometimes worry that I’m taking more from my healthy friends than I can give them in return. Canceling plans with them makes me feel terrible, and I find myself apologizing over and over.

However, with my chronically ill friends, the guilt isn’t there. Any plans we make are usually tentative because we both know that it will depend on how we’re feeling that day. We make plans that are easily changeable, and we never hold it against each other when someone cancels.

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November 2, 2018 Columns by Catarina Louro-Matos

How I Dealt with Cushing’s Disease Before, During, and After Diagnosis

Worrying about friendships

Because of my current health challenges, making plans has been incredibly difficult lately. I’ve had to make adjustments to attend bachelorette parties, birthdays, and even dinners. My fatigue is rough right now, and I need to spend time taking care of myself. However, my friendships are falling by the wayside. I find myself second-guessing every text, constantly worrying that my friends are mad at me, and spending a lot of time crying under my covers.

Despite these concerns, I’ve been able to rely on my community. My Cushing’s friends have received more messages from me these past few weeks than anyone else. On one particularly terrible day, I even reached out to my chronically ill colleagues for advice.

Leaning on my community

The best part is that I’ve never once felt judged by those in my community. I have a difficult time being vulnerable, but I took the leap and reached out. The responses I’ve gotten have been so encouraging and kind, and I’m not sure I would’ve been quite as OK without them.

I used to worry that relying on people too much made me a burden, or that reaching out to others made me weak. It’s taken me a long time to realize that everyone needs people who understand them, and leaning on those who’ve been through similar situations has made me a stronger person.

I’m so grateful for this community and the friends I’ve made. Being sick is so isolating, and it’s taken a tremendous toll on my mental health over the years. So this column is dedicated to every member of my community. Thank you for your kindness, your trust, your vulnerability, and your love. I might not be here without you.

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.