An Open Letter to Cushing’s Disease Caregivers

Note: I wrote other letters to patients awaiting diagnosis, those who have received surgery, and those who are years post-surgery. You can read them here.

Dear Caregivers,

On behalf of the Cushing’s community, thank you. Thank you for everything you do for the person you care for and for all your selfless actions that go unnoticed because your loved one is (or was) so hyperfocused on how they feel. If you could experience how Cushing’s feels, you’d understand.

You will never fully empathize with just how terrible this disease is. When your loved one complains or explains how horrific the disease is, you only need to listen. Stick with them, supporting every step. The person you care for doesn’t enjoy sickness and a low quality of life, or dependency on others. They’re trying their absolute best but need your patience and guidance.

When your loved one freaks out, it’s usually the cortisol talking, not them. Having incredibly elevated levels of cortisol causes a person to experience fight-or-flight mode at all times of the day and night.

Take time to remember an intense adrenaline rush, a period of stress. Think about how awful your body felt. Now imagine that feeling continuing nonstop, 24 hours a day, seven days a week. Not so fun, eh? When you’re stressed, you feel like lashing out, right? That’s what occurs in a body affected by Cushing’s — all day, every day.

The person you care for is sorry and isn’t intentionally cruel. The outbursts “just happen.” That really isn’t an excuse. Cushing’s kicks emotions fully out of control.

Thank you for attending doctor appointments, coming along to get bloodwork done, putting up with countless gigantic jugs of 24-hour urine tests, and waiting for MRIs and CT scans. This life isn’t fun, especially if you’re tagging along for every long appointment. But the disease is terrifying, even if the fright isn’t noticeable. Your support is beyond amazing. I’m so grateful for your sacrifices.

All in all, thank you for everything you do and will continue to do during recovery. After surgery, the appointments don’t stop, survivors don’t magically feel better (we actually feel worse if the procedure is successful), and trauma will likely exist. Cushing’s ruins a body from the inside out in a way only the victim can understand. Trust me: You never want to understand that experience. I would never wish this disease on my worst enemy.

XOXO,

Catarina

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