Imagine that you are having a serious conversation with someone that you have been involved with for almost 20 years and they end up telling you that they don’t know what makes you happy.
How would that make you feel?
Distraught? Shocked? Beside yourself? Dumbfounded?
How about all of the above?
This scenario actually happened to me recently and it was all of the above for me. There I was with someone I had devoted my life to and this person had no idea what makes me happy. How could this be? I knew this person inside and out. How could they not know me?
I had to give myself sometime to process this revelation and to figure out how this was even possible. I have encountered this type of thing before, but never at this level.
I was told growing up that I was stuck-up just because I didn’t talk much. As an adult I have been asked by a close family member if I even had feelings. I have been referred to as a robot numerous times. I was told by my second OB-GYN that I was the most stoic person she had ever known. This comment was made by this doctor after I had a traumatic pregnancy where I had almost lost my son and that had almost left me paralyzed. Based on my extensive damage and amount of pain I was in, she had expected me to be in a ball on the floor weeping, but instead I was calmly sitting in a chair talking to her.
The person mentioned in the beginning will tell you that I am actually a very emotional person. I wear my emotions on my sleeve, so to speak. I can’t hide them. My emotions are out and they are strong. I feel things very intensely, so how do people not see this? Why am I invisible?
According to , “To be happy one needn’t feel content, yet they do go hand in hand. Happiness is self defined. Let me word it as I percieve being happy. Happiness is purely a state of mind, so being happy is being in the flow of feeling good, irrespective of anything. Most of us in todays time, it is “I am happy becoz of this this this ….” and the list goes on,when that this this this is no more, then u move down to feeling low/sad/depressed. Being content is a level of acceptance to the now, there is no demand for more, it is just being happy with what it is, so indirectly contentment also leads to being happy.”
How often do autistic people’s ways of perceiving the world get dismissed, ignored, or told that how they feel is wrong simply because they are self-defining their own feelings and it doesn’t go along with so-called societal expectations on how feelings are “supposed to be” felt, expressed, and/or demonstrated?
There is no wrong way to experience feelings.
How you react when you are experiencing those feelings could potentially be problematic, however, especially if you hurt yourself or hurt someone else, but your feelings are never wrong.
Feelings and emotional states are often used interchangeably, but there are distinct differences. For more information about this see “What’s The Difference Between Feelings and Emotions?“.
In his blog “Are Feelings Good? Are Feelings Bad?“ Lawrence E. Kincade, PH.D., LCSW states “To put it clearly: they are neither. That’s right, feelings – any feeling and all feelings – are neither good nor bad. They are neither blameworthy nor deserving of praise. They are neither immoral nor virtuous. They are not right. They are not wrong. They just are. That’s the first thing to know about feelings. Feelings just come to you on their own. To say to yourself, “I shouldn’t have this feeling of anger!” makes as much sense as saying to yourself, “I shouldn’t have these brown eyes.” In both cases, you have no choice.”
My feelings are my own and I have no choice in how I experience them. They are neither right nor are they wrong. They just are. How I experience happiness isn’t wrong, either. It just is. Just because my way of experiencing happiness is not the same as another doesn’t mean I don’t experience happiness.
During the aforementioned conversation, it was determined that the definition of what “happiness” is happened to be different for the other person when compared to mine. This person couldn’t see my happiness, because it did not fit their definition of what they thought happiness is supposed to be.
Based on their definition, I would never be happy, because it involved being content and at peace in your environment. As an autistic person, the world hurts. Everything is too bright, too loud, too rough, too fast or not fast enough. Smells are too strong, food has to be a certain way, socks have to be straight, and no tags on clothes!
People behave in ways that don’t make any sense, yet I am expected to behave like they do, and why the heck is there so much importance placed on small talk? Just let me get my job done without the pressure to respond to something that has nothing to do with the task at hand. Also, why do people feel they have to kiss up to people? Laugh a fake laugh at things that aren’t funny? Why are people so vague? Say what you mean and mean what you say! How hard is that? Apparently, harder than I think, because people want you to look between the lines and figure out meaning. When their body language doesn’t match their words it gets very confusing, but they get mad at you because you misinterpret their confusing coded language.
How can anyone be content and at peace when your environment is like what is described above? What is described also doesn’t include problems that are only exasperated by additional health problems and co-existing conditions. When the world is not designed for you, just living becomes a challenge. I long for the day when I can live my life and not just survive, struggling each and every day just to make it to the next sunrise and then do it all over again. It is exhausting.
This all came to mind when I was confronted with the realization that this person whom I had spent almost half my life with didn’t know what made me happy. I began to think about all the other people in my life. Do they feel the same way? Do they really not know me, because their definition of (fill-in-the-blank) was different from mine? Was this why I have been referred to as a robot, selfish, stuck-up, cold-hearted, and unfeeling when it has always been the complete opposite?
I am 41 years old and I have never understood how so many people in my life have never really seen me. They see what they want to see, which isn’t always correct. There is a box and I am expected to fit in that box. If I don’t fit in whatever that box is, then I get the negative labels or I am ignored, dismissed, or never really known at all, which seems to be happening more over the years.
I was diagnosed when I was 36 years old. This diagnosis happened after both my children were diagnosed. My diagnosis was liberating for me. I finally understood that I wasn’t broken. I learned my neurology was different which meant I needed to unlearn some things and relearn other things. I had to learn how to cope in a world that isn’t designed for me. I had to learn how to advocate, because I was never taught how to. I had to learn that it was okay to say “no”, something that had been denied me all my life. One of the most important things I learned was to have pride in myself. Yes, I am a disabled person. Yes, I struggle, but I like who I am. I have worth. I have skill. I am human, I have feelings, and I matter.
Here is a song that I felt fit what was going on in my head during this time – How Soon Is Now (Lyrics On Screen) ~ by Love Spit Love (Cover), The Smiths (Original Version)
Unfortunately, many people in my life didn’t want to see me in any other way then what was in the preconceived box that they had been trying to shove me into all my life. I never fit in that box and I only got damaged by their attempts to make me fit. These people I am referring to couldn’t understand why I had spread my wings and fought to escape that box.
I had to grieve the loss of a life I thought I had and work to accept who I really was as a person. I never grieved when my children were diagnosed. I never felt I lost anything. They were still the same amazing people they had always been. We just had an answer now so they wouldn’t have to go through what I did. I was a different matter, though. I had 36 years of brainwashing and compliance training to overcome. People in my life couldn’t accept this grieving from me. To them, I apparently was supposed to still “pretend” to be who they expected me to me. They still couldn’t see me, the real me. I don’t know if they just couldn’t or wouldn’t see the person that I had always been. All I do know is that I was on my own and I was determined to make it through.
Here we are, five years later. So much as changed since I was diagnosed, so much upheaval, so much pain, so much loss, but also a chance for redemption and second chances. I am not the same person that I was when I embarked on this journey five years ago. I am stronger now. I learned about boundaries and have established firm ones. When someone who I love very much told me that they didn’t know what made me happy, I had to figure out what the heck was going on and not just let it get ignored.
As much as I was dumbfounded by this revelation, I also felt a sense of gratefulness that this person was being so honest with me. Honor, integrity, and accountability are very important virtues to me and this person has a history of lying by omission and being passive aggressive towards me. This time this person chose honesty over hiding things from me.
I honored this honesty by providing my own.
So, what makes me happy?
In 1998, I met a person on the door step of my sister’s apartment. I felt I had known this person all my life. This had never happened to me before and has not happened since. I felt safe with this person. I could wrap myself in his arms and the world would disappear. That painful overwhelming world would just melt away and all there was left was his warmth, his scent, the rise and fall of his breath, and the beat of his heart. For the first time in my life I could say I was really happy and content. It has remained that way even when all the problems arose and he chose to leave instead of facing his inner demons.
He came home, though, after three years, and it made all the difference. Once again, I am safe in his arms. Once again, we are a family.
Even after all this time he is still learning who I am, but at least he is willing to do that now. In the past, he was one of the ones who wanted me to fit in a preconceived box of expectations. Now he is helping me spread my wings and we are facing this world together.
I love you, honey. Thank you for being who you are.