I wanted to make this blog post because there seems to be a lack of awareness on this topic. The other day, I saw a new doctor on Telehealth. I told her I was having issues breathing and that I preferred to write in the chat log (if there was one). She said there was no chat log, and I said that I will hang on as long as I can speak. She did urge me to call 911 if I needed to, but she was pretty hasty, rolling her eyes pretty much the entire time, with an attitude (before I even told her I was having difficulty breathing). I won’t be seeing her again. In her notes, she didn’t dismiss that I was ill, but she did write down that I claimed to be having some breathing distress but that I was “talking fine, talking in full sentences / paragraphs, and not in any breathing distress”. She put something like, “patient claims she’s breathless and can’t talk, yet she continues to talk very fast and is not actually having any issues breathing.”
I wanted to put this out here, loud and clear!! Just because someone is feeling distress upon breathing and while verbally speaking does NOT necessarily mean this person can’t talk “at all”, and it doesn’t mean that this person isn’t suffering to the max when he/she speaks.
There are MULTIPLE manifestations / types of “breathlessness”. That is an ambiguous word. That is why I used the phrase “difficulty breathing” earlier on. No matter the semantics you choose to use, the universal message should be clear: that if we tell you we are in distress verbally speaking, WE ARE.
NOT all shortness of breath presents the same. Of course I was not having a heart attack. I know what THAT type of “short of breath” is like. That is a breathing for me that was very fast, with frequent deep gasps, with the worst distress and inability to catch my breath whatsoever.
For my usual daily symptoms, though, my “difficulty breathing” is much different than that!! I guess even doctors aren’t familiar with “this type” of “difficulty breathing”. Again, having “difficulty breathing” could mean a variety of things!! Well, she did technically tell me she was not a doctor but rather a nurse practitioner. (I even had a NP who didn’t know what dysautonomia was recently, so I can’t hold them too accountable here. But, they should open their minds a little.)
Even when I’m not speaking, I have labored breathing. It’s not the same type as when you have to labor your breathing when you’re in an SVT attack; I get that way too. That’s much different. When I have labored breathing, I have to manually focus on each breath. My chest is also VERY tight, and my airways are not that elastic to begin with. My lungs are always tight and compressed. I also have apnea both while awake and asleep... and not the obstructive type but the central type where the brain doesn’t even send the message to breathe. I don’t have apnea all day long. That part does come in waves. Some days it’s very severe and breathing isn’t automatic. At that point I have to focus very hard, and when I speak and my brain is going fast, it becomes almost impossible for me to breathe enough. I will talk until I get faint and then it jolts me to breath. But on the moments/days that the apnea is not severe, I still have many other respiratory issues that are exacerbated while speaking verbally. There are moments I can’t speak at all, and there are moments I can speak with just a little distress (which always worsens as I go). My FEV1 is EXTREMELY low, which is the forced air output. My lungs are also hyperinflated, as seen on chest x-rays. I was also diagnosed with COPD on top of astham and the low FEV1.
When I speak, I am VERY lightheaded / faint. I get more and more near-syncope as I speak. My airways get tighter because of their lack of elasticity. I did have nodules on my vocal cords years ago. I also felt a pop in my airway back in 2010 when this all started with my airways. I did have breathing difficulty since I was a child with exertion. I see phosphenes (stars) when I speak. I start to gasp for air. I take breaks at certain times. I may talk for 4 minutes straight and then suddenly stop talking fully. I may start doing very deep breathing which can sound like I’m sighing... I assure you I never sigh. It is me deep breathing. And people don’t even notice the deep breathing. If you see me in a video, though, you’d see how much distress I’m actually in if I were to highlight the exact moments that I’m holding my chest, breathing oddly, etc. I start to sum up my answers, EVEN IF I am still talking “a lot”! This is because I know the convo could go on for a while and I want to answer as much as possible even if I have to sum things up here and there. For anyone who knows me, they will know I’m an EXTREMELY DESCRIPTIVE person. That’s just the way I am. I’m not a person of a few words; I’m a person of many words. I love to talk. I was always extremely talkative.
Talking on the phone / video urges me to speak louder, and any time I speak loud, it makes me more breathless. I also used to be a singer and now I cannot sing much. That should be full proof right there. I went from being able to belt out a tune, even though I was always lightheaded to some degree doing so, to being able to hardly finish one stanza while only sitting down. Now my FEV1 is so low that I can hardly get a few lines of singing out at one time... and I can’t sign with much force for long. I can maybe sing with significant force for ~2 seconds max. I also can still scream / yell, but only for 2 seconds, and then i’m left suffering greatly afterwards.
After every vocal interaction, I’m suffering SO much. It actually makes me worse because then I can’t go and exert after speaking. After talking to someone, it usually takes about 45 min for me to reset and then I can go into a wheelchair or use the bathroom, etc. People have NO idea how distressing this is. I would love nothing more than to use sign language or another method, but people do NOT see this as a “real problem” because it’s so rare. If I were deaf, yeah, sure people will use sign language. Funny thing is I can hardly hear... I lip read mostly now... and when people turn their backs and I can’t hear them, I have to ask “what” repeatedly. And it’s not even an issue with volume... I can hear volume fine, so hearing aides won’t help. It’s a problem hearing clarity, as I have extremely loud tinnitus going on at all times, involving knocking sounds, rumbling, and 8+ pitches of tones, some pulsing. I also have tensor tempani and tons of ear pressure. So believe me, I would love to use sign language, but because I’m not “deaf” no one would accommodate that. And here I will sit, suffering, for the rest of my life!!!! I also would like to write things down. Sometimes I do. Some people will not entertain that, because they can see I can still speak. But what they don’t see is how much worse it makes me, how bad I feel during it and after it, and how I can’t do anything for so long after speaking. It would give me so much freedom to be able to use sign language or write things down.
Just because I can verbally speak does not mean it’s not torturing me. MY LUNGS FEEL LIKE BRICKS to lift with each breath, and when I speak, I have to lift so much more. It feels like 100 pounds. And it exhausts me. My heart rate goes up. My heart also becomes inadequate and doesn’t beat right after talking for several minutes or even after exerting at all. I burn so many calories from just TRYING to speak, due to my heart rate going up. I get so exhausted just talking a little bit. I can’t afford to speak but I do it anyway because I’m stuck in a world that only caters to visible disabilities. If you have an invisible disability, forget it. You’ll always be seen as meek, weak, and a wuss to outsiders. I’m so spent and wrung out from all this explaining. I don’t owe anyone an explanation, but here I am making myself all stressed out because an uninformed, narrow-minded nurse would rather assume than look at my past history or ask me in writing on a message.
