Speaking in Code... How to Tell People When You're Not Okay

General
1

I recently posted to my blog about the coded language that I find myself speaking to people as my own way of letting people know how I'm doing.

What started as some lighthearted joking with myself, became what I determined to be what I do to hide my illness. Unfortunately, I then don't know how to tell people when I am struggling.

Here is an excerpt from my blog, The Maren Update:

How are you? The four part question with an 8 part answer…
It’s hard to be around people when you feel like crap, even though you need those people to help lift you up.

Ask me, “How are you?” Did I pause? If so, it’s because you were not specific enough. “How are you” is a very specific question with an oddly strategic answer that will give the asker coded information to which they just might get an answer. Why not just answer the question you ask? Because this is my own highly evolved passive aggressive coping mechanism, that’s why.

How are you doing or how are you feeling?
The answer to how I’m doing will give insight into my feelings about the world, my feelings of gratitude, happiness, internal peacefulness, love of family and friends, the weather, whether or not I have eaten recently, etc.

The answer to how I’m feeling is the direct route to my health. I hate this one. It’s why I write this blog, to avoid it. I like to live in a fairy land where at any given opportunity, I can pretend like my disease isn’t there, or at least be distracted from it. While there are so many things to be thankful for in life and in my own experience with DM, it still remains the one thing in my life that brings me down, makes me sad, and scares the living shit out of me and there is very little that I can do about it.
I don’t have the ability to just say, “I’m fine,” and move on. Sorry. For those of you who struggle with knowing what to say to someone with an illness, I apologize for not making this any easier. I’m not sure if it’s the “Minnesota Nice” in me or some kind of guilty conscience that makes me feel like I have to answer everything nicely and with an honest answer or what, but I’m here to tell you that I’m doing my best in my own upside-down way.

Here comes the top secret coding.

1. Question: “How are you doing?”
Answer: “I’m great!”
Translation 1A: “I am alive with a wonderful family and friends who love me. I am filled with gratitude for the life that I live and am smiling because of all the beauty around me and the love in my heart.”
Translation 1B: “I am not great, but I don’t know you well enough to care if you know that I’m lying to your face or not.”
2. Question: “How are you feeling?”
Answer: “I’m great!”
Translation 2A: “I really am feeling great and couldn’t be happier!”
Translation 2B: “I may not feel 100%, but I am happily in denial at the moment and it’s really working for me.”

Note: I really am almost always, “great”! This is no joke! And those of you who know me know that it only takes me about 5 minutes to have a new best friend, so 1B is reserved for that person standing in line at the checkout, or a waiter at a restaurant.
3. Question: “How are you feeling?”
Answer: “I’m alright.”
Translation 3A: “I’m struggling, but am fighting through it and staying positive.”
Translation 3B: “I feel like shit and I don’t want to talk about it.”

You know things are bad when…

4. Question: “How are you doing?”
Answer: “I’m alright. I’m hanging in there.”
Translation 4A: “Code Red! Oversharing! Mayday! Answering for “feeling” when the question was “doing”! Abort ship! Head home immediately to the safety of sweatpants and ice cream!”
Translation 4B: There is no 4B. #4 is a place where I usually am not, but I’m here now. #4 is sad, depressing state that is hard to shake and I hate being here. It’s filled with fear of the unknown and fear of the known. It’s the constant reminder that I’m not in a good place, whether it be by the way I feel or look, or the thing that I tend to struggle with most, which is who I’m not, who I am no longer and who I may never be.
Do you find yourself speaking in code?

Know that even if you do, that top-secret language isn't needed here. We are a family that can speak honestly with each other. We are here to lift each other up and offer support.

It feels good to have a code-free place to go to.
2

This so very true…I am caretaker for my daughter,and I know her code all to well.

3

I definitely speak in code. And rarely people get it. It’s just a way to get them to move on without feeling uncomfortable or thinking that I’m completely cured so they can ask me to baby sit for they’re baby’s or do any other physically/mentally draining activities from now on etc… I may be having a good moment or day. Or like the other day I was in the ER feeling awful with a migraine. I got treated with two shots and was able to go home. That night I felt good enough to drive my daughter to Church. My mom gets so snotty like I’m not sick because I’m Not laying in bed all of the time. I can’t let my kid miss out on things because I don’t feel well, so yeah, I drag myself out and do things.

And people see me on fb doing things with family, so automatically I must be all better. I guess I should post all of the nights I’m up throwing up and laying on the couch barely able to move. Or when I’m crying because the daily pain.

Ok, rant over!

That had almost nothing to do with your discussion Maren!

Enita, I think it’s great that you know your daughters code, but heartbreaking at the same time :-(. Thanks for being here!

4

Rant away Nichole! I hate that you have to go through that with your mom :-(

One of the troubles of social media is that "fairy tale" or edited view into everyone's life that we see. It definitely doesn't help those of us with the "invisible illnesses" since it only seems to validate the thought that we seem just fine to others.


Nichole Smith said:

I definitely speak in code. And rarely people get it. It's just a way to get them to move on without feeling uncomfortable or thinking that I'm completely cured so they can ask me to baby sit for they're baby's or do any other physically/mentally draining activities from now on etc... I may be having a good moment or day. Or like the other day I was in the ER feeling awful with a migraine. I got treated with two shots and was able to go home. That night I felt good enough to drive my daughter to Church. My mom gets so snotty like I'm not sick because I'm Not laying in bed all of the time. I can't let my kid miss out on things because I don't feel well, so yeah, I drag myself out and do things.

And people see me on fb doing things with family, so automatically I must be all better. I guess I should post all of the nights I'm up throwing up and laying on the couch barely able to move. Or when I'm crying because the daily pain.

Ok, rant over!

That had almost nothing to do with your discussion Maren!

Enita, I think it's great that you know your daughters code, but heartbreaking at the same time :-(. Thanks for being here!