An Open Letter to Veteran Cushing’s Survivors

Note: I wrote two previous Cushing’s letters to patients awaiting diagnosis and those who have received surgery. You can read them here.

Dear Cushing’s Survivor Veteran,

How have the past years been treating you? I hope with more good than bad. I’m just under two years post-operation, so I don’t know as much as you, especially since we are all so unique regarding our remissions.

I believe this letter will include a few assumptions and possibly a lot of questions. I feel like a little baby in terms of remission compared to those of you who are five or even 10 years down the line.

One thing I’m confidently going to assume is that our annual MRIs always come with major anxiety. I know I’m due for my yearly MRI in October, and I’m already nervous. Heck, I have anxiety about my pending 1.5-year appointment with my endocrinologist. I’m always scared that something is going to point to my Cushing’s coming back.

Question time, though: Do any of you ever worry that you’re dealing with a Cushing’s symptom and then find out it’s nothing? Cushing’s ruined our bodies, and it messes up absolutely everything, so sometimes it’s hard to tell if it’s just a “regular” person issue or if it’s a Cushing’s issue. I guess my question here really is, do we ever stop thinking about illness as the possibility that Cushing’s might come back? I’m struggling with that part, and I’m sure others in recovery are, too.

What does it feel like to be years into remission? Is it significantly better? Do you have some of the same issues that you had before? Are you still adjusting to how you wake up every day? I know these questions will be answered quite differently depending on whether someone has an adrenal insufficiency diagnosis or not. I’m curious regardless.

Did you find new routines and stick to them? New diets? New lifestyles?

OK, so I guess this letter was more questions than assumptions. That’s what happens when writing an honest and raw letter. You never know what you’re going to get once the thoughts start flowing.

If there is something I didn’t ask or something I didn’t assume and should’ve, please tell me. I would love to hear about your experiences, your story, and how you are doing now. Leave a comment below and share your story with others who are looking for guidance.

XOXO,

Catarina

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