Last week, I discussed how to cope with bad days within yourself. This week, I’ll discuss how to best tackle problems with other people. Cushing’s, and all the symptoms that come with it, is difficult to explain. It’s even more difficult for someone without Cushing’s to truly understand it.
More often than not, people are a bit sympathetic about our struggles, but after a while, they become annoyed and bothered as though we’re a huge inconvenience to them. It’s a real eye roll, especially when it affects our lives in ways they couldn’t even begin to imagine.
With Cushing’s, we get angry because our bodies are constantly in fight-or-flight mode. Our irritability and irrational decision-making are out in full force at all times. I’ve had my fair share of explosions, and even though I knew reacting those ways were wrong, I couldn’t stop it. I felt insane and out of control. You, too, will experience this, and it’ll be ugly. But apologizing and explaining yourself afterward goes a long way.
So, that said, let’s head into my first tip for effectively dealing with others who don’t understand how the disease affects you:
1. Educate yourself
It’s always more difficult to go through things alone, but it’s even worse to go through something you don’t understand. Cushing’s is incredibly complex, and there’s still a lot of research to explore. Regardless, educate yourself with the information that is out there. That includes learning about florid and cyclical Cushing’s; the tumor types (microadenomas and macroadenomas, as well as brain and adrenal); and the types of tests performed, such as MRIs and CT scans, for an official Cushing’s diagnosis. Again, Cushing’s is complex and there is a lot of information to learn. Even experts are still learning more about it each day.
Note: If you research, make sure you’re reading reputable sources, such as the Mayo Clinic.
2. Be honest
Even when people are unkind, be honest with them. Cushing’s isn’t just a “fat disease.” It’s a disease that affects you internally and externally. No, it’s not cancerous, but it’s just as deadly. Some patients told me that their doctors even went as far to say that it’s worse than some cancers because of the complexity of finding a course of action to help with a disease that presents itself uniquely in each patient.
(Note: This is not diminishing anyone with cancer. It’s merely an example to use to get the seriousness of Cushing’s across. Since it’s rare, people don’t think it’s very serious.)
When people refuse to listen and understand, I simply say, “This disease is hell, and it takes a special kind of strength in an individual to live with the horrible effects of the disease. I’m very happy this isn’t happening to you because, seeing as you can’t even listen and try to understand, you wouldn’t be able to last a single day in my shoes.” I say this as calmly yet firmly as possible. It shows I’m serious about my struggle and that my honesty is something I don’t want taken lightly. It’s harsh, but it’s true. I’ve used this only about three times, but it completely transformed the other person’s mind. They now show me respect and take time to ask questions.
3. When people leave, let them
This was a hard pill to swallow. People who disappear in your greatest time of need are not worth it. They’re the type that, if they stayed, they’d act like you’re the burden — but you’re not. It’s so incredibly difficult, but you’ll feel so much better without the negative energy surrounding you. When battling Cushing’s, our energy is already so low that it truly is a blessing to allow those who choose to leave. Surround yourself with support and love instead. This is much easier said than done, but you will thank yourself in the long run, I promise.
You’re going to come across a lot of really mean people, but it will only make you stronger. You’ll realize who matters, who doesn’t, and what is and isn’t worth your energy. Your time and space during these difficult times are even more precious than they were before your diagnosis. Although Cushing’s is hell, it’s also a bit of a blessing. Finding out what and who truly matters in your life is one of the greatest gifts you will receive.
See you guys after the long weekend next week! Thank you for reading!
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 Services, and are intended to spark discussion about issues pertaining to endometriosis.