Learning to Adjust with Cushing’s

Having Cushing’s is a major scare and an even bigger adjustment to life. No matter how much you want to do things you used to do, you keep finding that the reality is you can’t — you have to adjust. You think that after surgery, everything will be amazing and back to “normal,” but it won’t — you’ll still have to adjust.

Being 16 months post-operation, I’m here to tell you that adjustment (just like in every single life, with Cushing’s or not) is a constant. Those of us with Cushing’s, and those who are post-operation, just have to adjust and readjust more frequently than others.

For a very long time, I had difficulty accepting that I had to make constant adjustments to my life at such a young age. I hated that I couldn’t be consistent with plans, people, and myself. Everything I had planned for my life after graduation went down the drain and to this day, I still find I often have a very hard time accepting my fate. I started showing major symptoms at the end of 21, was diagnosed at 23 just two months after graduation, and had plans to be moved out of my parents’ place by 25. As you can probably guess, I’m 25, still at home, and do not currently have a career.

About eight months ago, at eight months post-operation, I decided to try to go back to work in my field — marketing. What a major mistake. My brain doesn’t work the way it used to, and my body does not have the strength and stamina to pull long hours like it used to. It was definitely a shock to me, especially since before I started getting incredibly sick, I used to be able to work 5 a.m. shifts for 12 hours, and do whacky things most people wouldn’t dare try.

So, I went from being a productive human being to having to relax every 30 to 60 minutes to avoid feeling ill. I’ve also come to realize that a lot of the reason I was able to do crazy hours and get up easily in the morning was that my cortisol levels were going up. Nothing like a good ole constant state of fight or flight to keep you awake all day, every day.

When searching for a diagnosis, I never even thought I’d be able to do half the things I wanted to do ever again in my life. But I found that all I had to do was adjust to how I’m doing at a current given moment. Whether it be a daily adjustment (you’ll make those every day; you can’t avoid them), or a weekly or monthly one, don’t be so hard on yourself. Just be honest with the people around you so they know how you’re doing. With Cushing’s, people only see the acne, body fat, and unruly hair, and think we’re just “lazy.” So, we need to be honest with those around us about the real effects of Cushing’s so they understand where we’re coming from. Otherwise, people won’t know, and they would never guess. It’s up to us to educate them.

If you feel lost and unable to find your way, revelations will come to you one day. I promise. At 15 months post-operation, it just clicked for me. I decided that my dream job of one day owning a spa/medi-spa was going to be my future reality. I get to work for myself, and although I know it is a lot of hours to put in, I am on no one else’s timeline but my own. Do I need a day off? I’ll give it to myself. Do I want to work five days a week, six hours a day? I’ll do it.

At 16 months post-op, I am two certifications in, and working on a third. I am opening a small studio in my parent’s house (thanks, parents!) to build up income to get a location of my own. This is how I’m adjusting to my current body and its needs. I’m adjusting the best way I can to ensure I can start earning an income without overextending myself or losing my job because an employer doesn’t care about my health.

Your adjustments won’t look like mine, and your adjustments won’t happen as quickly or slowly as mine. That’s OK. Just like I said in my last post, everyone’s journey is their own. You just have to ride your own waves. Just don’t be so hard on yourself!

Until next week,

XOXO, Catarina

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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 Services, and are intended to spark discussion about issues pertaining to Cushing’s disease.