The emotional pain of labels…

JohnR1972

I grew up hearing that “words hurt more than fists” but I didn’t really understand what that meant. I went to a public school and was called plenty of names but I survived, seemingly intact, because I didn’t put much importance on the opinions of the people calling me those names. I am now in my 50s and as recently as last Monday, I still didn’t fully understand the pain of labels, but that all changed last Tuesday.

I am probably over sharing but at least I now realize why I do that from time to time. Last Tuesday I learned that I have Autism Spectrum Disorder (ASD). Upon learning this news, I felt devastated and my first concern was wondering how obvious it has been to others for the past 50+ years. For the first time in my life, I truly understood the pain a label can cause.

The logical part of my brain knew nothing had actually changed, I am still the same person I was the day before learning about my ASD. However, that did not comfort the emotional part of my brain that suddenly had to deal with the social stigma and my own insecurities about the ASD “label”.

I am INCREDIBLY GRATEFUL to a couple of truly wonderful people on this site that I reached out to privately and shared this news with last week. Their words of comfort, acceptance, and reassurance mean more to me than I can possibly express. One of them reframed “Autism Spectrum” as Neuro-Divergent, a term that feels a lot less stigmatizing and a lot easier for me to accept.

I am not looking for sympathy, just sharing this insight about the pain of labels and the incredible healing and comforting power of words spoken by caring and understanding people.

Most, if not all, of you probably already knew this and I knew it myself, to a degree, but it took on a whole new meaning for me last week. My neuro-divergence has not held me back professionally as I have been successful in my careers (I have changed a few times over the years) but I now see with more clarity how it has at times negatively impacted my personal life and social interactions.

As I continue to learn and grow, I will carry this lesson with me for the rest of my life - to be cautious with my words to help ensure they are comforting and healing rather than contributing to anyone else’s pain.

SunsetSnuggles

@JohnR1972 So proud of you for sharing this and being open! It helps so much to have support from others when we are going through a difficult time.

I truly believe there is strength and comfort in finding out the names for various aspects of ourselves. I hope, in time, this "label" becomes a welcome badge of self-awareness and self-acceptance.

There can be so many reactions and emotions when we find out something about ourselves, or a diagnosis we weren't aware of, and that's okay. Let yourself naturally move through whatever feelings come up. I and we are here for the questioning, the fallout, the growth, and the beauty.

~ Sunset Snuggles

steve97

I agree. FWIW, you can think of it as a label that a mental health professional assigned to you, but certainly not something that defines or changes you. In the beginning of this video, a former therapist talks about the harm of labels and how many diagnoses are arbitrary and overlapping. Not going to debate anyone on the validity of the psychotherapy field, but it's an interesting perspective. Perhaps I am biased because I had an awful experience with therapy that left me worse than when I started, although I was not labeled with anything. Still, the video is worth checking out his perspective as maybe it will bring you some relief and perspective.

PeopleLikeUs

That's an amazing thing to find out about yourself. A friend of mine was labeled hypochondriac for years by everybody before being diagnosed as Neuro-Divergent. Now his life is focused, the people around him understand him better and he is moving ahead and making great progress. I'm glad to hear you've got this figured out @JohnR1972.

JohnR1972

@SunsetSnuggles - I genuinely appreciate your positivity on the forums!! I also appreciate your words of encouragement. I wish there were a lot more people like you in this world!

JohnR1972

@steve97 thank you for your comment and the video link (I will watch today). In my case, it wasn’t a mental health professional that told me but a DNA test from Nebula Genomics. There are 2 gene sequences associated with ASD. I “scored” in the 98th percentile on one and the 100th percentile on the other for a genetic predisposition for ASD.

My initial reaction was disbelief, in part because I didn’t even think about the possibility of ASD showing up in my DNA test. But as the news sank in, A lot of things started to make sense. In college I tested out of a second semester physics course (the professor told me I was the first person to do so since he had been teaching physics at that University). I knew I was gifted in complex data analysis but I just didn’t realize why until seeing my DNA results.

steve97

@JohnR1972 oh wow, I didn't realize there was a DNA test for something like that, my mistake. I can understand the disbelief but I guess on some level it can be validating to get those results. Like you said, a lot of things started to make sense.

SunsetSnuggles

@JohnR1972 You are too kind. 🤗

@steve97 posted: "it can be validating to get those results. Like you said, a lot of things started to make sense."
Exactly. I had a counselor tell me something about my relationship with my mom...at first I laughed it off. Then I bought the book he told me to read, and was dumbfounded. My childhood was in that book. It was shocking and upsetting, but so validating to realize there was a name for what had happened to me, that it wasn't my fault, that I wasn't alone... In time I was so grateful to have learned about it, and I wouldn't trade that knowledge for anything.

~ Sunset Snuggles

sunnysideup

@JohnR1972

Thanks for sharing this. Also agree that I wish there were more people like @SunsetSnuggles on this planet.

I am 33 years old. I have struggled in social situations often, never had a girlfriend either, tank every date I've been on, so I know I'm not ugly but it's something else. I do fine professionally. I've never been diagnosed with autism, but many people around me suspected it or comment that I may be neurodivergent. It may explain some of my challenges. But I don't really know, I feel normal I guess, until people start pointing out differences.

JohnR1972

@steve97 I didn’t realize the DNA test would pick it up either. There are a lot of different companies doing DNA testing but most are not that detailed. 23andMe and Ancestry both focus more on tracing your ancestry. Nebula Genomics has a MUCH better privacy policy and they do full genome sequencing so the report is much more detailed with information on your genetic predisposition for over 200 medical, cognitive and behavioral traits / conditions.

The good news is that physically I have a below average risk for nearly all serious diseases and barring an accident, I should live a very long and healthy life 😊

JohnR1972

@PeopleLikeUs
Thank you! After the shock wore off (well, at least mostly wore off) I started to realize knowledge of my neuro-divergence was a lens with which I could more clearly view events in my past and so much made more sense to me from some professional accomplishments to some interpersonal challenges I have struggled with. I now realize more fully that some things that come very easy for me (problem solving, statistics, and data analysis) are much more challenging for some people while things that come easy for many other people, such as social interactions, at times are quite challenging for me.

Hi Steve, great you felt open to share on this forum. I have several friends who identify as autistic and/or neurodivergent - and the label has helped them greatly to understand themselves. Most of the challenges they experience are from the dominance of neurotypical culture, which does not appreciate how they communicate and express themselves. reach out for support from fellow people who identify as autistic - there is a lot of great supportive people out there - Good luck with it all

JohnR1972

@JinxedT
Thank you. I have found some of the most incredible and understanding people imaginable on this site. Some I have already cuddled with and some I am planning to cuddle with in the near future. I had not thought about reaching out to other Neuro-Divergent people yet as this is still all new to me but I appreciate the suggestion and will definitely look into doing that.

GreatHornedOwl

Many of us have one or more labels. Yours, at least, is not apparent to a casual observer, or to anybody reading your profile. To most people, you appear to be a completely normal person. You're affliction (if you can even call it that) is not at all apparent.

I hate to be the bearer of bad news, but get ready to have at least one more label applied. In another 10 years or so you will start to be labeled as old. It will be apparent to even the most casual observer. That label will have more of an effect on your life than will your actual age. Let me give you some examples.

When I was 62, the company that I was working for was bought out and the new ownership mover the operation to Mexico. It was impossible to find a new job. Nobody will hire a 62 year old engineer. I couldn't even get any interviews. Oddly, those same people are perfectly happy to hire a 62 year old consultant, so I didn't starve.

Now that I'm older yet, my age causes another problem for me. I've had more than one woman on this site come right out and tell me "You're too old to cuddle." The rest of the women here are more polite, but appear to share the opinion, because very few will even reply to a message.

Other people have different labels. Larger people are labeled "fat." For no good reason, that label probably has a much greater effect upon their professional careers, than does yours. Interestingly, they do appear to be in some demand as cuddle partners.

It would be interesting for others to chime in and tell us hoe they have been labeled.

pmvines

When you refer to someone as a label , you take away part of their humanity. I much prefer people first language. To lead with a label is disempowering and belittling

My son is on autism spectrum. Never really mattered and never cared to get a diagnosis. However, there are certain school accommodations and programs that were available to him based on his diagnosis, so he had to do a battery of tests for that. He is aware of his diagnosis, and is high functioning so it has never been a barrier. I have never called him autistic, and correct people who do that as he a person who has autism . Label or diagnosis should never go first or be what defines the person.

JohnR1972

@sunnysideup
Thank you for your post. As I look back over my own experience I find a great irony. I have taught professional development classes on “change management” for companies who were struggling to implement organizational changes. One of the points I address early in my presentation is that “no matter how screwed up a SITUATION is, if it is all you know, that is your ‘normal.’ “

I am not implying that you or I or anyone else is “screwed up” but the point is that whatever we are accustomed to is our personal brand of “normal”. It kind of reminds me a bit of an old cartoon I saw years ago of two children (both maybe 7 or 8 years old) talking and the girl was asking the boy “are you the opposite sex or am I?”

Differences are just that, differences. One may be more common than the other but at the end of the day, they are still just differences each with their own set of advantages and disadvantages.

I think where we as a society go wrong is when we start judging and stigmatizing those differences either overtly or even subconsciously.

quixotic_life

"As I continue to learn and grow, I will... ...be cautious with my words to help ensure they are comforting and healing rather than contributing to anyone else’s pain." ~ @JohnR1972

I'd like to as well.

...some processing on display...

I think one of the hard parts of this for me is that I'm fairly blunt and sometimes I come across in a way that's far from how I'm feeling or had intended my words to be received. When I feel that I, or another, has been been unjustly targeted, it's historically been a great challenge to hold my tongue and not allow myself to be a snarky ass bitch.

The fact is though, change is hard. Especially when there's reward or instant gratification tied to it. It's a double-edged sword really because on the one hand I get a kind of ego boost satisfaction around slaying someone, but it's also somewhat short-lived and often comes with quilt and shame. It feels shity to have hindsight point out once again, I may have done to someone else something that really hurts when done to me (misplaced/unjust retaliation).

I worry some about my ability to change the ingrained and control my impulses. Perhaps putting more work into empathy and forgiveness, for other's humanity and my own, is the key to unlocking a version of myself that I can look at and feel content with. That and a bit of "posting" control too (which I've also been working on...) because it's here in the forums that my ick tends to seep far more than anywhere else.

But I'm trying.

---

Thank you @JohnR1972 for posting this. Neurodivergent or not, I'd guess the majority of folks struggle to some degree with all of this. And for myself at least, it's nice to have someone else's experience to look at and feel a deep sense of connection in what would otherwise be a very lonely place. ~ 💓

JohnR1972

@pmvines
I agree with you 100%. I still do not think of myself as Autistic but the term neuro-divergent really seems much more accurate. I have realized for a long time that my brain works somewhat differently than most people.

@GreatHornedOwl
Thank you for your comment. I agree, my condition is not very obvious. When I shared the news with 2 cuddle partners from this website, they both told me they had suspected that I was on the spectrum but it didn’t matter to them and neither of them ever said a word about it. However, they are both very empathetic and probably picked up on things that most people would never notice (at least I don’t think most people would ever notice).

Your point is well taken about the prevalence of age discrimination in our society. I have a full time job that I believe I will be in until I choose to retire but that is still many years away. I also have a consulting business that I run on the side and if necessary I could pretty easily go back to full time consulting. My Neuro-Divergence is sometimes a challenge in my personal life but in hindsight I realize it was a gift in my consulting work.

CrissyKat

I grew up with stick and stones may break my bones but words will never hurt me.

pmvines

@JohnR1972 truth is there are a lot of people who wouid likely be diagnosed with some form of autism , or neuro divergence, if they were tested and looking for it . Especially by today's diagnostic criteria since several autism adjacent disorders have all been clustered together and they now lump it together as spectrum disorder. You arent alone in this, trust me

JohnR1972

@quixotic_life
There was a famous motivational speaker I heard once (I think it was either Brian Tracey or Earl Nightengale). They told the story of a New York subway commuter who was annoyed one Sunday morning by 3 children who were very unruly and “running wild” and yelling and arguing with each other on the subway. Meanwhile, their father wasn’t doing anything to get them to behave, he was just sitting there while his kids ran wild annoying other passengers. After several minutes of the father not paying any attention to what his kids were doing, a female passenger asked the man if he could do something about his kids. The father, who seemed lost in thought, apologized to the woman and said they were on their way home from the hospital where he had just lost his wife and that he didn’t realize what his kids had been doing.

That one piece of information, about what the man and his kids had just experienced, turned understanding of the whole situation around from “unruly kids” and an “inattentive” father to a family of people each coping in their own way with a great loss.

I try my best (but still frequently fail) to put myself in other people’s shoes before speaking or judging.

I know you well enough to know that you can be extremely uplifting and encouraging and that is how I think of you 😊

cuddles_ndream

@JohnR1972 The coolest person in the world to me and countless others, (who also happens to be the wealthiest person in the world) is diagnosed with Asperger Syndrome which is a condition on the Autism Spectrum. Ty for being vulnerable & sharing with us. 🌌

CharlieBear

@JohnR1972 I have not been diagnosed (yet) but I am very sure I am neuro-divergent as well. I don’t see it as a negative thing at all, just different. It certainly explains a lot though. Though considering I haven’t received an official diagnosis I don’t refer to myself in that way.

Opulence

@JohnR1972 I'm glad you found this information so you could continue to grow and be your best self. Labels could hurt initially because of preconceived notions and stigma, but once understood, you can master self. I think it's part of your growing process and you are handling it like a champ! Much respect and hugs to you! Thank you for sharing.

GreatHornedOwl

@CrissyKat Unfortunately, old sayings aren't always valid. Words do hurt.

CrissyKat

Not me. I took that old saying to heart. Your words mean NOTHING! Haha

JoyfulHeart

@JohnR1972

Thank you for posting, and for your authenticity and vulnerability.

There are too many people in this world who look at the labels that others involuntarily wear, and think that they now know that person. As much as classifiers gonna classify, every last one of us is in a class by ourselves.

Thank you for being you. It's something that no one else can come close to doing.

@quixotic_life

Thank you for sharing vulnerably too. I see you. I think that you are a beautiful human being.

JohnR1972

@CrissyKat
I understand where you are coming from, I have been where you are. I was significantly overweight from middle school until just last year when I began my health journey and made several key lifestyle changes (I never call it a diet, it is a new lifestyle).

I let names roll off me for years because I didn’t care much about the opinions of the people calling me names. I used to firmly believe “names will never hurt me” until they did.

The greatest irony is that nobody actually called me anything. I saw in my DNA test results that I have all the markers of ASD and upon reflecting on my life, I realized it was true - kind of like Bruce Willis at the end of the Sixth Sense when he made a dramatic discovery about himself.

It was just the realization that I have ASD that brought the pain because of the social stigma. I am not about to let this stop me or slow me down from pursuing the many goals I have in life. I just realized through my personal experience how devastating or healing words can be. It has made me more aware of the need to be careful with my words.

sillysassy

Awwwwwww there is so much beauty going on here.

First off..... Thank you so much @JohnR1972 for being a voice in the forums that chooses kindness, self-reflection, mindfulness, and an outlook that speaks volumes to others who are on BOTH sides of this fence. Its not always easy to post in these forums for MULTITUDES of reasons, but I appreciate your willingness to be vulnerable and share anyway. 😊

I love love love what @pmvines said about being a HUMAN first. I feel like THAT is the one thing that ties us all together. We are humans with attributes. Whatever different things those might be they don't define us. One fabulous human put it this way "Its not my most salient feature" I ABSOLUTELY love that. We might be short/fun-sized, or heavy/squishy, we might have blue eyes or freckles, we might be a crazy loud snorer or a person who has to run everywhere they go.

ITS JUST A FEATURE.

I think sometimes the fear of being "unique" drives us to look for differences/similarities so we can somehow feel like we're ok in our own skin. I for one LOVE-love LOVE all the things that make us human. We can celebrate and value that in each other. How much can I learn from someone like you? SO VERY MUCH!! For the very basic reason that you and I have differences but we can also celebrate our similarities.

I'm so glad you have found people in your life who want to accept and appreciate you. The YOU that is exactly you instead of an IDEA of you. 🌞🌼🌻

sunnysideup

Words can hurt, depending on their source. One-off words with the intention to hurt from strangers (internet folks too) can be brushed off pretty easily. From a loved one, not so much. or maybe a label that society may view with negative connotation that implies you are an outsider or otherwise not accepted (racial slurs, medical or physical diagnoses etc). Or a label that society says you must be a certain way or not do x jobs if you grow up assigning yourself that label.

JohnR1972

@sunnysideup I agree 100% and BTW - I love your profile description