What the highs and lows of Cushing’s disease look like for me

Cortisol: It’s one of the hormones involved in the body’s fight-or-flight response. Feeling anxious about a test? You might be able to thank cortisol for that. Think everyone hates you? Perhaps it’s cortisol.

Most people don’t know that cortisol can also make you depressed, like on those days when the world seems like it’s ending.

When you have a disease like Cushing’s that involves cortisol, it can be incredibly hard to manage your emotions. In my case, I was constantly shaken by panic attacks, mental breakdowns, and a feeling that my life would never be normal again. I tried to mentally prepare myself for this reality, but each time I was swept away by my emotions, as if I were drowning under the weight of everything I was feeling.

So what did I do? How did I make it through that?

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Leaning into it

Let’s start with the lows. The lows come with aches and pains that hurt so bad I want to cry myself to sleep every night. They involve hopelessness, depression, extreme sadness, and days when I want to lock myself in the bathroom to sob. At first I tried to deny these emotions by telling myself it was just the cortisol talking. I would take a few deep breaths. But it didn’t help.

So I decided to lean into the sadness. I made a music playlist on Spotify called “Shorty a Little Saddy” that I would listen to on repeat. I would put on a sad movie and let myself feel everything. I would sob and let my partner take care of me. They were the kind of sobs you can feel in your entire body.

From there, I found outlets to release my anger and sadness. Painting, knitting, and cooking became ways for me to push myself to express how I was feeling. I didn’t worry about making good art, I just worried about how it made me feel.

And I got myself a therapist. I can’t stress enough the importance of taking care of your mental health when you have Cushing’s disease. Not only is there the major stress of having a chronic illness, constant doctor appointments, and impostor syndrome, but also an entirely different range of emotions that is caused by the disease.

Now for the highs. These come with intense anxiety. They may involve texting your friends after every interaction to find out if they’re still mad at you. They may be accompanied by bursts of energy and intense insomnia that makes you want to scream. They might prompt negative thoughts like you’re making it all up, your partner is going to leave you, or everyone hates you.

As you can imagine, anxiety like that can be incredibly overwhelming. Eventually, for me, it led to frequent panic attacks. I would spiral quickly and find myself panicking about made-up scenarios. Little things turned into big things. And on top of everything, I was angry. I was angry at everyone in my life for not understanding, at myself for my various reactions, and at my doctors for not figuring out everything sooner. I was mad at the world for moving forward and leaving me behind.

So, of course, I made another playlist. I leaned into these feelings, too. I acknowledged my anger. Sometimes it worked, but I soon realized that leaning into your emotions can be just a Band-Aid. I couldn’t keep having a meltdown every time I had to go out to meet a friend. I needed to control it.

I found a sense of calmness by practicing Pilates, yoga, and self-care. If I needed to calm myself down, I would take a bath. If I was feeling angry, I would stretch, sit down, and force myself to go through the motions of a 10-minute Pilates tutorial.

Overall, the most important thing I learned is that I needed to be kind to myself. I needed to recognize that this body and these emotions were different than before I was chronically ill. I had to embrace myself and my emotions, and love myself through them.

What works for you when you’re facing similar challenges? Please let me know 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.