Vocal cord dysfunction

Join the Conversation on
Vocal cord dysfunction
665 people
0 stories
109 posts
About Vocal cord dysfunction
Explore Our Newsletters
What's New in Vocal cord dysfunction
See full photo

I am reliable, my health isn’t

I have vocal cord dysfunction wrong diagnosed as severe asthma and was treated for asthma for ten years. My airway clamps off when I am exposed to strong odors, perfumes, cleaners, lotions, hair products, soap, humid weather, exercise, laying flat, bending over, being frightened….anything. I am a registered nurse that loves patient contact, but I can no longer do it and breathe. The anxiety surrounding anticipating the next attack is palpable. The only hope to get better, or stay out of the hospital is to stay away from my triggers…sensitivity not allergy do avoidance is the answer. Yet this means avoiding everything and everyone. No more hugs, no going out to eat unless it’s outside on a good breathing day. No birthday parties, thanksgiving gathering, no working as an ICU nurse. Depression with suicidal ideation, chronic back issues from car accident.
Having a really hard time keeping my head above water. Working hard to do the things I need to do to make it through hard days, and enjoy the good ones.
I look normal, healthy and strong yet I don’t feel like any of those things.

18 reactions 3 comments

Sometimes I hate language #Autism #CommunicationDisorder #AugmentativeAndAlternativeCommunication #LanguageDisorder

Lately the stress in my life has been messing with my language abilities, more than usual. Mostly expressive, but of course, since I have developmental receptive language difficulties as well, that's affected too. It's reminded me (over and over again) that the basic, underlying , fundamental difficulties that have been with me all my life really haven't changed, even though I've got oodles more compensatory skills than I used to. Many of which I've been losing to various degrees, for varying lengths of time.

I really don't have anyone in my life anymore who understands what it's like to struggle with language, to struggle with communication, to struggle even with the concepts that underlie these things. Much less the physical difficulties that present themselves periodically as well. (Movement disorder type things, which may or may not be partially diagnosed). #Apraxia #ApraxiaOfSpeech #VocalCordDysfunction #FocalDystonia #SensoryProcessingDisorder #SensoryIntegration

I feel like such an alien sometimes... having difficulty understanding concepts other people (even children) take for granted, yet easily understanding and being able to do things other people find difficult, easily.

1 comment
See full photo

I Was Not Always A Proud Disabled Business Owner

I am a proud disabled business owner. However, I have not always been. Being a bubble girl is not a badge of honor I wanted to wear. To be frank, I found my disability shameful, and embarrassing and wanted to hide it. I wanted to be seen as a whole person and not broken.

Learning young that success was only attainable if you hid vulnerabilities and put on a good game face was a lie. Yet, it felt the most comfortable place to be and I hid it well.

As A Young Girl

At age of 5, I was running businesses out of my grandmother’s kitchen. With a mustard-colored rotary phone, stacks of thick books filled with page after page of floral patterned wallpaper, and a pencil in hand I was making imaginary sales – to imaginary people.

When I type that out, it sounds a little crazy. I was a kid. Did no one else have imaginary clients?

It was obvious 40 years ago, that entrepreneurship effortlessly coursed through my veins, yet, I never knew that it would be the golden key to living a quality and secure life with a disability.

Health Crisis

By the age of 14, my health issues evolved beyond nuisances and by the age of 19, they grew debilitating. I was brushed off by every doctor who either told me “there is nothing actually wrong with you” or “it is all in your head”. As I was placed on a feeding tube formula in 2012 for years, they pinned me as an anorexic and encouraged me to go to a treatment center.

Living 20 years with no answers, going in and out of the hospital sometimes numerous times a week, and the constant gaslighting by the medical community was very destabilizing and isolating. The loss of support over time from family and friends who started to believe I was neurotic or a hypochondriac felt crushing.

Honestly, I can't blame them. Yet, I knew instinctively that something was very wrong even if no one believed me.

My disease is rare, complex, and hard to pin down. I do believe doctors at times tried to help but often gave up. Others doctors did not even give me a chance and brushed me off immediately when they could not figure me out and I was not a simple case. Doctors don’t like a good mystery like that do in the show Grey’s Anatomy.

Aspirations Lost

My college aspiration to be a therapist was unattainable because I did not have the stamina or ability to stay in college. I enrolled and re-enrolled over and over again. I finally had to let it go.

During this time, with an abundance of time on my hands and an inability to get out into the world, being isolated gave me a new direction. I leaned into technology to research my debilitating symptoms, create connections, built community and try to gain visibility. The internet and technology saved my life in more than one way.

I started to learn website design in 1998, back when Geocities was a thing as well as graphic design and marketing.

Brief History: 1994, GeoCities was created a web hosting service that allowed users to create and publish websites for free.

Connection Through The Digital Space

Another thing I loved was being creative so I created fine art through digital means due to my severe allergies to any and all art mediums. I mastered painting with a mouse in photoshop and later was so delighted by the invention of tablets. Creativity and digital connections were not only therapeutic but one of the few windows I had into the real world and helped me stay alive.

Not long after I had started to gain ground as an artist as well as a woman in tech, I started to create visibility and income which gave me the tools to help others do the same.

Tech/Digital Skills: A Window Outside And Independence

Over the last 24 years, these skills and tools have been invaluable to me and others. I run a full-service digital marketing agency where I help my clients create authentic connections with their audience, help them gain a voice, and move into a more visible space.

Over the last few years of Covid, unlike a larger percent of the population that lived more normal and abled-bodied lives typically, I found the isolation not unfamiliar or hard to deal with. It has always been my normal and nothing changed that much for me.

I already worked remotely, I was already limited in where I could go. I often wore a mask (as I have for 15 years). I had to be careful and learn a new way to live safely.

Yet, I found those close to me who lived much more normal lives had taken a big hit. It was jarring, painful, depressing, and isolating no matter what your belief system is. The whole world changed around us.

Opportunities in Vulnerability

During this time I found it imperative to be vulnerable and support others who were struggling in this new space. I was able to sustain a number of small businesses by helping them move from in-person to online to an e-commerce platform. I helped others start and set up online courses for teaching what they loved. I also helped then build solid marketing plans so they could let go of the fear of losing their businesses.

Being a part of a greater story of overcoming and vulnerability for others around me, as well as a very significant life event changed me (more on that soon). I felt it was important not to hide my disability any longer.

Finally A Diagnosis

In late 2018, I was finally given medication, which changed my life and improved my prognosis – still no diagnosis. June 2021, I was given a life-changing diagnosis after almost 20 years of suffering from Ehlers Danlos Syndrome (Type 3), Mast Cell Disease, Dysautonomia, and POTS (Post Orthostatic Tachycardia). I also have PTSD, Cranio-Cervical Instability, Hiatal Hernia, Dysphagia, Vocal Cord Dysfunction, Neurodiversity, Esophageal Dysmotility, etc.

The long and short of this is I am Gumby. I am allergic to almost everything ( I can eat only 10 foods) and can easily go into anaphylaxis over just about anything my body finds out of normal such as food getting stuck in my throat and sternum making it hard to breathe or digest food.

My autonomic nervous system is on strike and if I stand up or lean over too fast, my heart rate goes up so fast that I can pass out. My head could fall off like the children's fairy tale "The Green Ribbon" and have a slight lisp my partner thinks is cute.

I can’t say I have ever explained my whole medical record which is about 3 inches thick in just a couple of sentences – short and sweet for the win.

I Am Disabled. I Can’t Pretend.

With a life-changing diagnosis that I can’t pretend I don’t have, I can be more active in a world that needs people to be real, authentic, and vulnerable. With my newfound stability moving out of survival mode to the thriving mode, it would be a disservice to not share my story or try to amplify the voices of other disabled people in the world and in business.

If I hide behind my disability and don’t step into my truth, I am a hypocrite. If I believe in diversity, equity, and inclusion only for others and not myself… how can I be an advocate?

It is cliche to say that “we have to put on our mask first if a plane is going down”, but it is true. We can’t empower others if we minimize ourselves.

Even though right now my disability is stable and I can step up and reach out to help others, it might not always be the case. It is obvious to me and others who live with a chronic illness that our abilities to help and participate in the world are often unpredictable. It is an ebb and flow.

We must meet ourselves where we are right now and right now I can stand up and be a voice. Later I might have to quietly slip into the background for deep self-care and repair without feeling bad, shameful, or less than. I can champion others who are able to hold the light for a while and run with the torch.

I identify as a disabled business owner and I stand with others in the best way that I can right now. I stand with others who feel marginalized in society.

Visibility for disability is so important.

I am proud to be a disabled business owner.#

1 reaction 13 comments

I’m new here!

Hi, my name is wrynky_dink. I’m new to The Mighty and look forward to sharing my story. My EDS, POTS, and MCAS have been long suspected, but only diagnosed this month, and I’m looking forward to having a direction to work in towards recovery :)

#MightyTogether #Depression #Anxiety #VocalCordDysfunction #ehlers-DanlosSyndrome #ADHD #Dysautonomia

1 reaction 1 comment
See full photo

World Voice Day post #WVD

Well, before World Voice Day ends, I guess I should follow through on my impulse this morning to post something about it, spawned by a suggestion from the National Spasmodic Dysphonia Association. I guess I should start with I don't actually have a diagnosis for my vocal spasms and the related breathing, and sometimes swallowing issues, #Undiagnosed but SD was one of the working assumptions by several people in my life (medical professional and otherwise) for a long time. I've been questioning if we got it right recently, but am not sure I'll ever really know, given the lack of specialists arouhd here, and several other factors. Or, for that matter, how much good it would do me, other than just knowing, given the lack of research and knowledge that exists on some of the other possibilities.
#Dystonia #VocalCordDysfunction

Anyways, combined with some of the #CPTSD #Trauma #PTSD issues, and the #Autism and #AdultDiagnosis and #SensoryProcessingDisorder #SensoryIntegration issues, I've been dealing with voice issues, and difficulties with #speech and #SpeechDisorders all my life. It was only by giving up on speech as my main method of communication that I was able to learn that there was a purpose for speech, and that it sometimes did have its' uses. #CommunicationDisorders after many years of using AAC for any communication situation I wasn't comfortable in, I am slowly coming to see that not only is speech not the enemy, nor is communication as a whole, but that despite my #CentralAuditoryProcessingDisorder , sometimes I do also prefer to hear certain people's voices, and communicate with them in real time, and through this very difficult medium (for me) with them.

Having been allowed to take control of how I communicate in communicative situations has made a world of difference for me, and changed my whole perspective on socialization on general. Especially as diversity is becoming more accepted in society (mostly. Don't get me started on the backsliding I see happening during COVID!) so that there is less animosity and more patience exhibited by society when they see me using AAC.


Questioning the origin of my vocal spasms

#VocalCordDysfunction #Dystonia #Autism #Dysphagia #SensoryIntegration #SensoryProcessingDisorder #MotorDisorders #Dyspraxia #Apraxia #ApraxiaOfSpeech #Undiagnosed I posted a question on the vocal cord dysfunction and dystonia communities earlier tonight, and then did a little research on vocal cord dysfunction in order to see if I could find any answers to a question that has been unanswered or partially answered for decades in my life. About the cause of the painful vocal spasms I've had all my life, and the dysphagia issues that developed in early adulthood, that seemed to be related. An exacerbation, if you will. Both have waxed and waned significantly since.

What I found google suggested two things: 1. Nobody in the medical community really has a clue about vocal spasms, although the field of dystonia has more knowledge than the rest. And 2: Given all my other issues, it is entirely likely these symptoms are not caused by jyst one thing. It could be a number of things! Oh yeah, I forgot to add #Trauma #PTSD #CPTSD and #Asthma to the list of potential factors. Oh, and #childabusesurvivor .

Stress does seem to have played a factor, as does #Fatigue especially as I consider the baseline level of fatigue and stress I lived with for most if my life that I am only now beginning to realize the effects they must've had on me, and how much it all must've inhibited my abilities and ability to grow as a person, and to learn. (Which were hidden due to my high intelligence and academic ability. #Hyperlexia played a factor in that. And the general intolerance of the people in my environment, and the ableist nature of society in general.) And the cost its all had on/to me.

But there's a lot of neurological complexities too, as you can see by the hashtags. It makes me leery of trying yo officially get this sorted out after all. Most medical professionals won't know quite what to make of it all, if they even know the terms! Still, I wonder... I've always thought it was one thing, or mostly one thing, but maybe it isn't. Maybe it is more part of the whole "interesting neurological mess" thing so many autistics find themselves dealing with. (Multiple neurological syndromes that are too complicated to try to explain how they all work, never mind interact, to outsiders)