Being kind to yourself is key when managing Cushing’s disease

I’ve often thought that my chronic illness is a burden on me and everyone else around me. Because of this mindset, I’ve found myself apologizing for it.

When my medicine caused me to vomit in front of my in-laws, I was embarrassed. When I hit a low point and had to take three days off work, I felt like I was letting my team down. When I needed mobility aids to navigate an area that wasn’t accessible, I found myself apologizing to the facility!

Why is it that I feel the need to apologize for my illness, which is completely out of my control? Why do I find myself feeling such dread when revealing even an ounce of the illness to the outside world?

Insecurities

I’m insecure about many details of my chronic illness. I’ve had to cancel plans because my headache was so severe I couldn’t leave the darkness of my bedroom. Countless times, I’ve had to explain that I can’t attend an event because it isn’t wheelchair accessible. I’ve even lost friends over my illness. Whenever I flare up and am confined to my home, certain friends don’t flinch, while others disappear.

I was diagnosed with Cushing’s disease when I was 24 but the symptoms started appearing when I was 18. When I changed due to the disease, I expected the world to stay the same. I thought I just had to work around everyone and everything else. In some ways, I do. The nearest wheelchair-accessible train station is 20 minutes away, for example. I take a ton of pills every day and have learned to manage every symptom.

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November 2, 2018 Columns by Catarina Louro-Matos

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

Selfishness

In other ways, though, the world needs to work around me. It may sound selfish, but if people want to be a part of my life, then they have to be willing to accept and love every part of me. They don’t have to physically hold my hair back when I vomit, of course, but they do have to call me, tell me they love me, and understand my limitations.

I’m working on teaching myself that I deserve to take up space. Yes, I have Cushing’s disease, but that doesn’t mean I deserve any less in life. People who care about me will find places for us to go that are wheelchair accessible. They’ll reschedule when I have to cancel, and they’ll find my friendship worthwhile just as it is. I have a lot to offer, and if someone can’t see that, it’s their loss.

From this day forward, my new goal is to stop apologizing for things that are out of my control. I didn’t ask for my illness, and I must acknowledge that it’s not going anywhere. The kinder I can be to myself, the better my life will be.

Do you approach your chronic illness with kindness? If so, how? Please share in the comments below. 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.