Today's blog comes to us from a good friend in the Washington area. Hopefully we will see her when we go to Seattle in 2 weeks.
With Cushing's, there can be a huge disconnect with how we process information both input and output, especially while talking. That is why I usually like to email or instant message, or even text instead of talking on the phone or talking face to face. It has always been like this as long as I can remember, but with the tech revolution it has been easier for me to communicate my thoughts and feelings to people with tech ability. Below is what my good friend said to me, and I agree whole heartedly.
"Whenever I have to wait somewhere I organize (everything) it and write notes to myself so that when I get on the phone with these people I don't sound like an idiot. They get so irritated when you overstate what you need. I sometimes will tell them in advance when they answer. "listen..before we start I want you to know I have a brain tumor. This kind of tumor affects my thought process in a way that I can't articulate myself with a short explanation and a long explanation may even miss the point so please bear with me. It also affects me in a way that I am exhausted most of the time and I'm easily stress because I lack the proper stress and energy hormones so some of these issues weren't addressed in a timely manner. Is it possible for us to do this through IM, email, fax or snail mail so that I can get the assistance I need from another person or have time to think out your response and my answer?" I USUALLY get a decent response.
I think that when they mention that people with Cushings become reclusive that this communication problem is part of the reason. What I've noticed is that people with Cushings seem to have above average intelligence and most of us do more in a day than the average Joe does in a week - when we're sick- when we're not sick we can fit a month ... into a week. But when we're sick something misfires in our processing. Whatever step happens between the information going out or coming in gets garbled in transition. We CAN understand and we KNOW what we want to say or do but it theres a pause for us. It makes us seem like we don't know what they mean. Most of the people around me get frustrated because they are accustomed to me being sharp. They're already talking about something else by the time I get my original response out. Some even get mad because they think I'm not paying attn. Some get frustrated because I subconsciously just keep talking while I'm waiting for the real answer to come out in order to keep them from changing the subject or having a long awkward pause or just hoping that whatever comes out will include the answer. so...I just dont start or get involved in intelligent conversations because I'm so slow."
The Weary Zebra and Friends