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    Community Voices

    Suffering

    I don’t post on here much anymore. So, hi! But I just wanted to see if maybe anyone has a similar experience.

    I’ve been dealing with headaches. Every day. For going on 2 months. I’m trying to get into the Neurologist, but the insurance is taking its time. It kinda started suddenly and harshly.

    I’ve been in my bed for a good about of this time simply because of the imbearable amount of pain. I’ve now been on 5 prescriptions, and 4 shots, but nothing seems to be working. They keep saying it’s migraines. Ringing in my left ear. Running into walls. Almost falling. Cant walk straight. Cant hold conversation a lot of the time.

    Pain is one thing that I understand I might just need to learn to somehowww deal with, but the rest of it? Lol. I have to come home and cry a lot because either I feel frustrated with myself that I can’t speak to my friends without just… stuttering and giving up… or coming home screaming and crying because I am in so much pain I feel if I’m around people I might hurt someone.. so.

    It’s a lot. Plus, because of my headaches I’ve lost my job(s), and fun nights with friends. It’s ruling my life.

    #Headaches #Migraine #help

    6 people are talking about this
    Community Voices

    Misunderstood

    Part 3 of 4 okie of the Year in my first Veterinary Distribution position and went on to be a top performer either first or second in the nation every year for 9 years. Finally, an infectious disease physician in Tampa diagnosed me with #LymeDisease and #Babesiosis in 2009. We got to treating as aggressively as possible WHILE I kept working, never imagining I would not get rid of it. I had no safety net, no husband, no opportunity to stop working to treat and not lose everything. I maxed out any contributions to my 401K and saved and saved, put money into retirement knowing Chronic (not regular Lyme) is progressive. Busting my tail with God’s help and blessing through constant pain and sickness, determined not to lose my livelihood, my independence, my future to the disease all the while infusing with antibiotics, having to go to Germany 2 weeks in a hostile, because 15 years ago treating #LymeDisease was illegal, (Lyme treatments were in their infancy in this country) and in the middle of #Stuttering , falling into things, seeing floaters, God gave me the faith to purchase my home, my sanctuary, smartly during the recession, while at a sales meeting in California. All the while I had to pretend I was OK, enduring burning and stabbing in my head that started in 2005, among so many other neurologic issues.

    Having held somewhat of a high profile position because of my dedication and constant activity in the Veterinary Industry, all my body craves and does best with is quiet, peace, no stimulation, and isolation when I need to recover. If I didn’t live through my intense headaches, pains in eyes, face, gums among other symptoms, I wouldn’t live at all but pushing through them every day leaves me exhausted and needing recovery time.

    Finally medical leave after medical leave I voluntarily left my company because I decided my faithful (& BEST) customers deserved a healthy person whose body didn’t keep sending them out of the field on medical leaves. Shockingly, I got denied my disability insurance. After being called a liar by the insurance company and that my Germany treatments where I was ACUTELY ill were falsely described as a vacation, I had to hire a lawyer to win disability for the year. I have files and files of proof and medical records from my serious medical conditions, but add the term #LymeDisease , and it is met with scrutiny because the differentiation between #LymeDisease and Chronic #LymeDisease is not recognized by enough of the world yet. I have dealt with a mountain of #neglect by the medical community and injustice by insurance companies. And all the while having to hide my illness. I would collapse in my car, throw up, be unable to walk out of the blue, stutter, and feel shocks of pain in my head, arm cramps, soreness in ribcage, all while speaking with veterinarians or doing presentations. I had to have surgeries to repair tendons and severely injured my back, neck and knees when I would flare and still do. This started in my TWENTIES, not as I aged. It’s not the same. My heart BREAKS for children afflicted with this nightmare. Against the doctors’ advice and reality, I went back to work and worked four more years in equine health, and equine nutrition. The topmost specialist in Washington DC, Dr. Jemsek, found me to be one of his worst patients and during treatments there I actually had my fourth and final interview for the Equine Nutrition position in the hotel before one of my clinical visits and told my doctor that God wouldn’t bring me this far just to see me fail. My ridiculous optimism served me well until it didn’t. It took me YEARS and YEARS to change my expectations due to the inability to get relief despite all the determination, faith, belief, effort, and WANTING so badly to feel anything resembling “healthy.” I am so glad I did go back to work even though it was not sustainable because I found my true talent, and gift in an area I could use all my veterinary and medical knowledge in as well…Equine Nutrition. During a business lunch with co-workers one day, I told them I push on and make the most of every day because of the hope that I could have a good day. They couldn’t conceive of 90% of days living in a torture chamber. It was so beyond their reality, they thought maybe I was kidding and laughed because I never complained. I don’t blame them. Every time I got established and my executive team and employers told me they didn’t care if I only worked two days a week through my illness, what I produced was great and they would keep me hired, the compan

    James Hayden

    What I Want to Say vs. What I Can Say as a Person Who Stutters

    “Hi! Welcome to your favorite restaurant. What can I get for you today?” For most people, this experience is nothing to write an article about. They order what they want, pay for their food, and continue on with their day. Yet for people who stutter (PWS), what we want to order might be different than what we can order. Let me explain. I’m a huge fan of unsweet tea with lemon, and I order that as my drink for nearly every meal. Whenever I order unsweet tea, more times than not, I will block on the “un” in unsweet tea. If I’m with my parents or sister, I will wait for them to order an unsweet tea for themselves and then say, “Same,” when the waiter asks for my drink order. If I’m by myself or with friends, I tend to stutter mightily on “unsweet tea” and then repeat it numerous times to make sure the waiter heard me correctly. (I know I’ll have my southern card revoked for this, but few things are worse than ordering an unsweet tea and getting sweet tea.) I could order something easier for me to say, such as water or lemonade, but I’d rather drink tea over the other options. It can also happen when customizing my order. There are times when I’ll get my burger without cheese instead of with cheese because I knew I was going to stutter on “add cheese please” and just didn’t want to deal with stuttering in that moment. But it’s not just ordering in a restaurant. It’s answering a question in class or partaking in a class discussion. It’s approaching that cute person at the bar and asking them for their number. It’s jumping in and joining a group conversation with others. It’s deciding whether or not to say “hi” to someone in the hallway at work. It’s whether you say “James” or “Ben” when the barista asks you for your name. It’s so many things that someone who doesn’t stutter might not even consider. During my college career, there were many times when I didn’t participate in class discussions or answer my professor’s questions. I sat out of discussions not because I had nothing to contribute; rather, I knew I would stutter and didn’t want to deal with stuttering. I didn’t answer questions because I didn’t want all eyes on me while I stuttered on the correct answer. Back then, being a person who was silent was better than being a person who stutters. Although I no longer believe that, there are still times when I lived and live that motto. There have been numerous times when I didn’t approach that cute girl because I was afraid that I might stutter during my introduction and she might say something hurtful in response. In those moments, the fear of how I can say it wins out over what I want to say. Even when I’m talking to friends, family, and co-workers, I might not jump in and make a joke or add my two cents to the topic. I do this because I know that by the time I say what I want to say, the conversation will be on a different topic and my joke or commentary is no longer relevant. These are people who know I stutter and don’t care that I stutter, yet knowing I can’t say what I want to say in a timely manner prevents me from joining the conversation. I can’t even tell you how many times I didn’t say hello to someone in a hallway at work over the past few years. I did this not to be rude, but rather because I could feel I was going to stutter on the word and knew by the time I got it out the person would be long gone. I know this because I tend to stutter the most on words that start with the letter “H.” I used to hate this part of my stutter, but now I find it somewhat ironic. So, how can saying what I want to say and saying what I can say be the same thing? For me, it’s to jump into those conversations more often. It’s to not let the fear of a few seconds of stuttering hold me back from getting a few groans from a joke. At times, it’s living what I talk about in my presentations. It’s to forgive myself for the times when I don’t live what I preach and when I sit out of a conversation because of stuttering. For others, it’s to know what stuttering looks like and sounds like. It’s to know how to properly respond to a stuttering moment. It’s making sure that your PWS knows that stuttering is welcomed into every conversation.  In summary, give us the space and grace to stutter openly. That way we can say or order what we want to say or order as opposed to say what we can say or order. This article was inspired by a conversation with my friend Erik X. Raj, Ph.D., CCC-SLP from Monmouth University.

    James Hayden

    It's Time to Stop Using 'Did I Stutter?' as an Insult

    “Did I stutter?” Some variation of this phase is typically used when person A clearly said something to person B and person B did not understand what person A said. Person B then asks person A to repeat themselves to which person A says the aforementioned phrase. This is typically meant as an insult to person B as they could not clearly hear person A. This phrase has been around for decades and has been said in every possible venue: film, NFL press conferences, scripted and non-scripted television, commercials, gifs, memes, TikToks, everyday conversations, and tweets from politicians. As a person who stutters (PWS), I’ve been uneasy about this phrase for as long as I can remember. I know other PWS who don’t have any issues with this phrase and that’s OK. Every PWS is on their own journey and views stuttering through their own lens. Whenever I hear this phrase, I cringe. I cringe because the phrase comes across as demeaning and insulting to the stuttering community. I cringe because dare I say it’s slightly offensive. I cringe because it shows how far we still have to go in terms of stuttering education. Although there are many examples to choose from, I’m going to focus on the uses of this phrase in three different contexts. They are: an attempt at humor, making stuttering seem like a bad thing, and perpetuating the negative stereotype that stuttering equals lying. Our most (in)famous example comes from a scene in a 2008 episode of NBC’s “The Office” titled “Did I Stutter?” In the scene Michael Scott (Steve Carrell) asks his co-workers for ideas on how to energize their office. After being asked, and declining, numerous times for ideas, Stanley (Leslie David Baker) says, “Did I stutter?” The room is instantly filled with awkward silence and Scott quickly moves to the next person. This scene produced the episode title, a popular GIF, and left me with a few questions. What was NBC trying to show their audience? That those three words are enough to break an awkward silence and get a laugh? What are they telling their fans who are PWS? That stuttering is worth laughing at? For a show with that type of platform and following, that’s the wrong message to send. Our next example is found in season 30 of my favorite show, “Survivor.” In episode 10 of “Survivor: Worlds Apart” (2015), Will Sims II uses a variation of the phrase after verbally assaulting fellow contestant Shirin Oskooi. Another contestant, Mike Halloway, comes to her defense and asks Sims to repeat what he said, to which Sims responds, “I don’t stutter, bro.” To me, the way Sims says “I don’t stutter, bro,” comes across as defensive and angry mixed with a tinge of shame. As if someone just announced his biggest secret to the world and he’s not comfortable with that announcement. I related to that mindset. For so long, if you brought up my stutter, I told you off. I’m not proud of that, but that’s the way I knew how to handle it. Looking back, I did it from a place of embarrassment, shame, and some anger about being a PWS. I rewatched this season recently and even though I now embrace my stutter those feelings of shame, anger, and embarrassment came back when I heard Sims’ words. For me, the tone in which Sims said the phrase further instills the negative belief that stuttering is something to be embarrassed, ashamed, and angered by. In reality, it’s the opposite. It is OK to stutter. Although progress has been made in removing the stigma associated with stuttering, we still have a long way to go. In a July 2021 tweet, Angela Rayner, a member of the British Parliament, used the phrase “Did I stutter? Tell me where I’m wrong.” The tweet was in response to a news reporter sharing Rayner’s reaction to a quote Boris Johnson made. The way Raynor uses the phrase “did I stutter?” implies that she lied. For so long, stuttering has been equating to lying and this tweet just perpetuates that lie. To make her point, she could’ve said “Did I lie?” or even better “Was I wrong?” Rather, she uses the one phrase that puts an entire population down and further reinforces a false stereotype. Rayner might not have known this was a false stereotype, but this is just another example of the importance of educating others about and advocating for stuttering. With these and many other unnamed examples, what does it say about us, as a society, that this phrase is still prevalent in pop culture? In the past two years, the importance of diversity and inclusion (D&I) has become more prevalent; however, stuttering is often still not thought of when we think about D&I. So, what can we do to better ourselves? The easiest answer is to remove the phrase from our lexicon. Instead of saying “did I stutter,” one can use “did you not understand me,” “do I need to repeat myself,” or “am I wrong” amongst other phrases. Secondly, we need to educate ourselves about stuttering. It’s more than repeating the first syllable of our name or blocking on our coffee order. It’s self-doubt. It’s not ordering what you want but ordering what you can say without stuttering. It’s avoiding situations because you’d rather stay silent than stutter. It’s doing everything in your power to not stutter. Over time, these feelings might disappear, and you may learn to be OK with this part of yourself. However, these feelings might rear their ugly head every once in a while, and hearing the phrase “did I stutter” could be that catalyst for their return. Lastly, we need to see people who stutter in our media where stuttering is just one part of their story and not their whole story. The more we see and hear stuttering, the sooner we normalize it and remove “did I stutter” from our vocabulary. And for the record, yes, I did stutter.

    Community Voices

    Paranoid and very annoyed

    My trauma is all consuming and confusing I can’t think without overdoing and analyzing every word till Im losing the point of the root of the message and I forget the next steps in the routine trip on my feet stumble stutter and hope you don’t interrupt while I think
    Im not done yet I’m not done yet
    My point is that
    I still haven’t made my point
    I can’t think with all the static in my ears
    And all the stuff in the viewfinder cant fucking focus or zoom in stuck on automatic with no swing in my step or skip in my spring
    Bouncing bouncing
    What do I even hold to be true to me?
    I still haven’t made a point
    Pointless, all of it,
    So it would seem
    Intelligent but still not like it seems
    Intel
    Intel
    Intell me I’m in hell and it feels like you can tell and see
    The sweat forming bead dripping down on my brow
    All these thoughts just shot the fuck out
    12 gauge, buckshot
    Calibre to kill some time
    Just don’t
    Interrupt me
    When I’m
    Fucking
    Looking
    For the point
    Looking for the point
    Sputtering
    Stuttering
    Mostly mostly
    Suffering
    Fucking
    Looking
    For the point
    I’m still talking
    Traffics really unpredictable
    I still haven’t found out if I consider it all livable
    #BipolarDisorder #Mania #Ramble #MightyPoets #BipolarStigma #FlightOfIdeas

    2 people are talking about this
    James Hayden

    Why Documenting Stuttering in Medical Records Is Important

    A couple of months ago I went for my yearly well visit. On my “after visit summary,” I noticed that stuttering was listed under the medical history section. If that had been on my previous after-visit summaries, then I never noticed it. At first, I found it interesting because I had never disclosed to my doctors that I’m a person who stutters (PWS). I’ve had the same medical team for a few years and they know I’m a PWS; however, I’ve never directly disclosed it to them. Yes, I sometimes wear stuttering-related t-shirts to my appointments, but I never said, “Hi, Dr. Smith. You probably know this, but I’m a person who stutters.” In fact, the only time I disclosed to a medical professional that I’m a PWS is to the paramedics that checked me out after I was involved in a hit and run (I was fine, my car wasn’t). There are a couple of reasons (or excuses) for why I never told my doctors that I’m a person who stutters. The first is that it’s obvious. I tend to not hide the fact that I’m a PWS and if you talk to me long enough, you’re going to figure it out. The bigger reason was most likely embarrassment. For the majority of my life, I didn’t want to acknowledge or own this part of myself to myself, so why would I acknowledge it to someone else? Over the past couple of years, I’ve gone from being embarrassed about this part of myself to now embracing this part of myself. With that said, I’ve never felt the need to re-introduce myself as a PWS to those who knew me when being a PWS was the last thing I wanted to disclose. Although younger me would disagree, I’m glad this fun fact about me is documented. In the event something happens to me, my doctors would expect me to stutter and not assume that something far worse is happening. This gives me peace knowing that tests and resources will be spent on those that need it and not me. It also further cements the trust I have in my medical team knowing that they will address what my real issues are and not my perceived issues. However, this isn’t the case for everyone. In a 2014 article by Dr. Lena Wen, we see what happens when a medical team is unfamiliar with stuttering. What was a simple block was treated as a heart attack. Time and resources were spent on someone who didn’t need them all because of a lack of knowledge of stuttering. So, what can we do to prevent the story Dr. Wen told from being told again? The first step is educating medical professionals about stuttering and other communication disorders. But in order to educate them, we need to have proper and factual information about the disorder. The Johns Hopkins definition of stuttering is the exact opposite of education. To say their definition of stuttering would be a problem is an understatement. Talking to others in both the medical community and the stuttering community, stuttering and how to interact with patients who stutter are rarely discussed. I think it’s important to have these discussions so people know what stuttering truly is and not what Johns Hopkins thinks it is. People who stutter and/or Speech Language Pathologists can speak to doctors, nurses, medical assistants, and other medical professionals. These presentations can be part of continuing education training or new employee orientation. If a live presentation doesn’t work, then a video presentation covering the same topics would suffice. Following these presentations, medical professionals will have the basic knowledge to identify a stuttering moment, even if the patient doesn’t want to identify with their stuttering moments. This basic knowledge is the key to differentiating a simple block from a heart attack or stroke. In a field where advancements are made on a regular basis, let’s advance how stuttering is understood and treated within the medical community. Let’s see it as just one part of the person and not a problem with the person.

    Community Voices

    # I never stuttered before until 2yrs ago when I was first triggered and it brought forth an onslaught of images that horrified me. Now, whenever I'm triggered or under intense stress I stutter. I find it frustrating so then I don't want to talk. Has anybody gone through this??
    #Stuttering

    Community Voices

    I've recently started to have nightmares again. I've been triggered and I'm going through emotional flashbacks, anxiety and stuttering. Do y'all relate? Any advice on stopping the nightmares??

    8 people are talking about this
    Community Voices

    Hi, my name is maya. I’m new to The Mighty. I'm a podcast producer about to launch a new series about the stuttering experience. It's called Proud Stutter. I am excited to be in community with you all!

    #MightyTogether

    1 person is talking about this
    James Hayden

    Why I Brought My Stuttering T-Shirt When Evacuating Hurricane Ida

    Imagine you only have a few hours, if you’re lucky, to pack up the essentials and irreplaceables, throw them into your vehicle, and leave for higher ground. What are you bringing? Unfortunately, myself and many southeast Louisiana residents know our answers due to Hurricane Ida’s recent visit. Most residents would give you some variation of the following list: the important papers, some family pictures, water, three days of clothes, the special things that can’t be replaced, snacks for the long car ride, and booze. For me, my answer was: my important papers, many snacks, some real food, many bottles of water and Powerade, pictures from my childhood, my TEDx speaker trophy, and about four days worth of clothes. When I pack clothes for evacuations, I make sure to bring t-shirts that mean something to me. That if I were to lose everything, I’d still have something tangible to represent what’s important to me. With that said, the first t-shirt I packed was my black #westutter t-shirt from the National Stuttering Association (NSA). I find it interesting because several years ago I would’ve left it at home and thought nothing of it. For me my #westutter shirt is so much more than a comfy t-shirt. It’s a tangible sign of how far I’ve come in my journey with stuttering. Years ago, the only time I would’ve worn that shirt is if I knew I’d be wearing a sweatshirt over it. Now, I wear it proudly for all to see. My #westutter shirt reminds me that I’m not 1 of 7 billion people who stutter, but rather 1 of the 7 million incredible people who stutter. It reminds me that I’m a part of a group that’s so much bigger than me. Lastly, it reminds me and other people who stutter that we are not alone. Yes, it’s easily replaceable, however; what it means to me is too essential and irreplaceable to be without for even a day. My family and I are safe and OK. Our houses had very little damage. However, many people in southeast Louisiana are not as fortunate and could use some good. If you can be the good for someone, then please be the good.  The biggest area that needs some good is the bayou region. These cities are part of the bayou region: Cocodrie, Chauvin, Montegut, Bourg, Dulac, Dularge, Houma, Schriever, Gray, Thibodaux, Raceland, Lockport, Larose, Lafitte, Galliano, Golden Meadow, Grand Isle, and Port Fourchon. If you can help these areas, then please do.