Attitude and Advocacy

I get asked a lot about my Cushing’s experience. I’ve documented my experience extensively on this blog, but I know ten years’ worth of information is a lot to sift through.

Overall, the two running themes in my post-Cushing’s journey have been “attitude is everything” and “advocate for yourself.” I know these may sound so cliché, but they are so important to remember during your fight for diagnosis and your recovery, no matter how long it’s been.

The hard days will happen. They never mean that you’re failing at recovery, or that Cushing’s is winning. They are never anything other than what they are. When they come, just know that they are temporary, and they will pass, and the clouds will go away. There’s not much I can promise when it comes to Cushing’s, but I can guarantee that the good days will come around again. While you’re in the midst of struggle, it’s incredibly hard to see the future and to know that what you’re going through is temporary. I know that first hand. By having a good attitude, you can beat Cushing’s and everything that comes with it. I do want to say, though, that having a good attitude doesn’t mean you will never have bad days. It just means that you won’t be overwhelmed by those awful moments in time and you won’t define your entire experience by one terrible, no good period.

Also, I say this a lot, but advocating for yourself is crucial. If something doesn’t feel right, listen to what your body is saying. Speak up. Doctors have fancy, expensive degrees and lots of information and research stored in their long term memories, but they’re lacking one super important thing: first hand knowledge. They have never actually experienced what you go through day to day, and any doctor worth their salt will listen to your story and take into account what you’re feeling and experiencing. But first, you have to proffer up the information. They can objectively guess and pinpoint all day long, but your subjective experience is of utmost importance.

Never be afraid to challenge them. After waiting so long to find a doctor that does listen to all of your random symptoms and diagnoses you, you may be afraid to challenge them out of fear of losing your doctor. I’ve been there, many times. I’ve learned, however, that by challenging them you keep them on their toes, you remind them to think outside of the box and do all of the things that made them want to be doctors in the first place.

Be your own advocate. Stand up for yourself, even to your doctors. Stand up to everyone that you need to and set boundaries. It doesn’t matter. Family, friends, co-workers, medical professionals. Set and enforce boundaries and challenge the status quo.

If you think of questions you have, comment below or send me an email.