Embracing the power of hope in life with Cushing’s disease

I have felt hopeless on many occasions. When I first got sick with Cushing’s disease and nobody seemed to know what was wrong with me, I felt completely devastated. When I underwent surgery to remove my pituitary tumor, it was during the height of the COVID-19 pandemic in 2020, so I was completely alone, terrified, and unsure. When my tumors reappeared over a year later and I had to prove I was sick all over again, hope seemed to slip away by the second.

As my mobility decreased and I started to rely on aids, or when depression overtook me and I didn’t know how to overcome it, hope felt far away. It’s hard to be sick, spend all your money on medication, and desperately pursue treatment while remaining optimistic.

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In many ways, my situation isn’t all that different from how it was before my diagnosis. I still have to prove to my health insurance company that I have Cushing’s disease. I’m treating it medically, with no surgery in sight. I still rely on mobility aids, deal with depression, and struggle day to day. What’s changed is my perspective.

For a while, I lived my life thinking the next thing would save me. Oh, if only I could get diagnosed. If only I could get surgery. If only I could land this job. If only this or that happens, everything will change.

It doesn’t.

Don’t get me wrong, I have a lot to be thankful for. I adore my job, I’m proud of my writing, I love my partner and my daughter, and I even have a home to call my own. But health, both physical and mental, used to bleed into everything I did.

It’s not simply a shift in perspective

I’m not, by any means, trying to say that if you just think positively, things will get better. I just want to share a few things that make my bad days a bit more bearable.

I don’t want to spend my entire life waiting for the next treatment, mobility aid, surgery, diagnosis, etc. Whenever I find myself in that waiting mindset, I force myself to snap out of it and focus on the present.

I’ve also been manifesting. I’m not sure whether this actually does anything, but it’s a quiet moment I take for myself to focus on what I want, and then let it go. I’m not religious, but perhaps manifestation is my version of prayer. I’ll usually light a candle, write down my wishes, or talk to my daughter about my hopes and dreams. Something about this ritual brings me a teeny-tiny ounce of hope.

I also try to end the day by reflecting on one thing that went well. Maybe my bones ached, my daughter had a bad day, and work was difficult, but it rained, and I love the sound of rain. It can be the smallest thing in the world, but it’s still a reminder that life is worth living.

Life isn’t always easy. I’m not always positive. But by finding hope in the good that exists today, I’m a little happier than I was last year.

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.