To deal with recent stress, I’m searching for ways to give back

Cushing’s disease can exacerbate any stress I have. It can get overwhelming, especially when it seems to be piling on — as happened during the recent election season.

Many people with Cushing’s experience something like post-traumatic stress disorder before pituitary surgery because their anxiety is just too much. Stress is also prominent because of the heightened level of cortisol we produce. In general, though, I’ve kept a pretty good handle on my stress through ketoconazole, therapy, and stress management techniques.

That’s changed these past few months, with my increased anxiety. It’s led me to one primary question, and, surprise, it’s not about my stress. Instead, it’s “How can I give back?”

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Making a difference

Lately, I’ve fallen short in that goal because of the past few months’ anxieties. They’ve left me feeling like a failure with constant dread, as if I’m just not doing enough.

Generally, I’m in a relatively good place with my health, and I’m itching for a way to help others. In most able-bodied communities, I’ve found, there isn’t enough knowledge of what people like me need, simply because there aren’t enough disabled and chronically ill voices in the room. I want to be a part of those conversations, especially when it comes to chronically ill youth.

Many of those voices I admire have been discussing helping grassroots organizations, but I’ve been feeling a bit numb and hopeless about where I fit in. I used to protest more, but my lack of mobility has made that difficult. I’m fortunate to have avenues to share about disability rights and chronic illness, but how else can I help?

I’ve found an amazing community through Cushing’s, but I don’t think everyone is lucky or well enough to search it out. I’m passionate about fighting for those with my disease, as well as other illnesses. Now, though, I worry that I’ve gotten too complacent and focused on my own health rather than the health of the community.

Maybe I’m being too harsh, as I generally think there’s never anything wrong with pushing myself to do more for others. Sharing my story has been a wonderful first step, but are there ways to take it further?

My first step toward doing more for my community is to get back to volunteering. I used to do that before my diagnosis, and I feel well enough to take that up again. I even reached out to a friend to volunteer with me to have someone to keep me accountable.

What can you do?

If you’re wondering how you can be an ally to people who are disabled and chronically ill, here are a few basic actions you can take.

Wear a mask: I’m not sure why masking happens less often these days, but almost every time I go out, there isn’t a single person (other than me) wearing a mask. I’m not unreasonable; I don’t expect anyone to wear a mask every second of every day. But for big events and crowded spaces, I recommend it. It’s one of the best ways to keep others safe.

Listen: If you’re an able-bodied person, put yourself on the back burner for a minute and listen to people with disabilities. Try not to be defensive when they say something you might not have heard because they’re coming from a different perspective.

Pay attention: So much is unknown about what’s ahead in equity for people with disabilities. Are you following the voices of advocates for our cause? Are you marching? Even having conversations about health equity can make a huge difference.

Proper healthcare has always been an uphill battle for me. As a result, I plan to fight for anyone who needs me, and I’ll spend time learning how to be a better advocate for my fellow chronically ill friends.

If you have ideas for what else I can do to give back, please let me know in the comments! 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.