The wrong end of the privilege stick.

There are some things society gives a green light to attack, and unless you’ve been in one of those positions yourself, you typically won’t see how constant and widespread that behavior is. It should not be normal, and when you bring it up, you get treated as if YOU are still to blame and still worthy of judgment. You must be focusing on the few negatives and ignoring the positives, you’re looking for offense, you clearly can’t accept that people don’t understand but mean well, you should be able to ignore it all, or you’re attention-seeking and making it sound more dramatic than it really is.

Living with Cushing’s Disease, it sincerely was the norm and not the exception, and I hated it. Sure it made me stronger, but I wanted kindness, help and support, not a constant barrage of open judgment and blame. I spent so much time and effort trying to educate the people who reacted that way.

But it didn’t work. Those who judged in ignorance still judged in knowledge (if they gained any). Being diagnosed with “the most morbid of diseases” by a world-renowned specialist didn’t change their minds. Having brain surgery didn’t change anything. Brain surgery! They didn’t care. And you know what? Those golden gems who cared and treated me like a human being all along? They still treated me with kindness and respect.

I have this bad habit of mistaking the path for the destination, and that is exactly what I was doing. Educating the judgement away didn’t work, but I don’t regret having tried at all —so many other worthwhile things came from making that effort. I was able to work through and release some of the emotions that came with the negativity I endured. I helped a large number of people struggling along side me. Those golden gems in my life who wanted to understand and help now had a means of better learning how to do so. Most importantly, I let others know they weren’t alone and that I understood, and they let me know the same. Being open and real about the pain and struggles is so cleansing for me; getting it all out really does seem to make room for healing.

Today I received a PM from someone I’d never met or spoken to before, desperate for help getting a diagnosis and treatment for Cushing’s (this time a parent with a sick child). For years this was a daily ,even thrice daily or more, occurrence for me. I was extremely active in the Cushing’s facebook groups as I navigated my own journey of diagnosis, treatment, and recovery.

The process can be intense, relentless, and heartbreaking, spanning years of our lives. For many treatment means trading an untreatable and deadly disease for one that is more manageable, so the intensity lessens but the struggle doesn’t cease.

As our conversation today was coming to an end, this person shared with me some of their pain at seeking help and receiving instead that same judgment and blame. Because what we generally receive from those around us (family, friends, doctors, even strangers) is judgement and blame, these friendships and facebook groups become our safe haven. These people get it. They understand. It is SO uncommon and such a relief. We commiserate but also help uplift and support so we can all gain better outcomes. We’ve figuratively AND literally saved lives, and had ours saved in turn.


*Something I wrote on Facebook Jan 8th, 2018