Hello again, everyone!
Hope you all had a fantastic week. For me, it’s been a weird one for many reasons. One relates to Cushing’s and a situation I realize wasn’t just me being easily annoyed. It’s truly something that needs to be worked on within the community.
I’ve been in a few groups on Facebook that are supposed to be support groups for Cushing’s disease, and it was absolute chaos. In those groups, some members want to have Cushing’s, but they are angry that their doctors keep telling them, test after test, that no, they don’t have it. There are those who fight with others. There are people who ask for opinions, don’t take the advice they get, and then get mad when they don’t get tested. The list goes on and on.
I get it – people are scared. They don’t know what’s wrong with them and they want an answer, and because they have so many Cushing’s symptoms, they want it to be that. They turn to support groups, instead of listening to medical professionals — and that’s where the real trouble begins.
We officially diagnosed “Cushies” really do understand our own bodies. We understand how horrible it is to go through the disease and how complex it is to get a diagnosis. We want to help whomever we can with whatever knowledge we’ve learned from our experiences. Although we know what’s best for us, regarding diagnosis, medical experts do know best.
I know, I know. This contradicts a lot of what I say when I say “trust your body, push for answers from your doctor, or make a switch if they don’t believe you.” When I say that, I’m referring to doctors who don’t believe in the disease and refer to it as a “horse and dog disease that humans can’t have.”
If your doctor is doing everything in their power to help you but the results are not coming back positive for Cushing’s, you should trust your doctor.
A harsh reality about Cushing’s is that most people who think they have it, don’t. It’s common for those who know nothing about Cushing’s to have the diagnosis fall onto their lap in my experience. Now, I’m not saying this is true for every single person in either type of situation. But it is common because Cushing’s shares many symptoms with other diseases.
If you’re reading this hoping for a diagnosis and your results don’t add up, be open to a different diagnosis. Instead of fighting with your doctor, ask what other types of diseases have your symptoms. Sometimes, it’s a different type of pituitary disease, or it is Cushing’s and the lab results need to catch up with your body. It’s tricky, as any disease that heavily involves your endocrine system is going to be.
I guess the point I’m trying to make overall is that support groups are great, but they can also be toxic. You have to be very careful what people tell you in those groups because, to be completely and brutally honest, a lot of the time it’s misinformation from very bitter, miserable individuals. Trust me — I’ve learned the hard way. There’s a lot of competition about whose symptoms are the worst. That’s not an environment you want to be in when you’re already scared!
You also need to really listen to your medical expert. Changing doctors is fine, but if you see three or more and they’re all telling you it’s inconclusive, maybe it’s time to sit down and ask your doctor “what else can we test for? There is something wrong, but we need to get to the bottom of whatever is happening.” I’ve met quite a few women who thought they had Cushing’s, and they had Lyme disease or lupus or another disease. So, always be open to exploring other diagnoses.
Hang in there — your answers will come, and treatment will be here before you know it. Be proactive, research, and discuss, but don’t close yourself off from other possible outcomes.
Until next week!
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 Cushing’s disease.