When Doctors Don't Recognize the More Unusual Symptoms of My Asthma

I have asthma. My asthma is very, very severe. This has been plaguing my every waking moment since July 2014. I had never experienced asthma prior to this.  My children did not have asthma, so everything about asthma was totally new to me. I am now 67 years old.

To say that this diagnosis put me on a learning curve is quite an understatement. Both my GP and my lung specialist spent very little time explaining about monitoring asthma and what to do. I didn’t even get an asthma plan for nearly nine months. No one told me about spacers. Because I am older, there were all of these assumptions made! The doctors assumed I somehow knew all this stuff.

Well, I didn’t know. There is a great deal of information available on childhood asthma but not quite so much on adult onset asthma. So, I set about to try to find out as much as I could.

I would go to the doctor and constantly be told, “I can’t hear any signs of asthma, you are not wheezing.” It didn’t matter that my peak flow was barely over 280… They couldn’t hear whatever they expected to hear in my lungs. I still don’t know what it is that my lungs don’t do! During an asthma attack I experience incredible chest tightness and it actually hurts to breathe. I feel like something is scraping and scratching my airways.

You see, with asthma, I cough! I have this more unusual form of asthma, cough variant asthma (CVA). My symptoms are not the norm. Coughing is a symptom of asthma but wheezing, that’s the one that the doctors look for. And when you don’t fit the criteria, you are judged pretty harshly. I get told that maybe I don’t really have asthma! Hmm! But everything else shows asthma is present. Why can’t doctors and nurses remember that there are forms of asthma that don’t do the usual things? Why do I have to stand up for myself when I am arrogantly told, “You are just panicking”?

Guess what! If any of those medical people had been struggling for each breath and unable to get sufficient oxygen, as I have been, then they just might get why you feel somewhat stressed… dare I say a little panic stricken! The feeling of panic happens after the asthma gets going… I want to rave and rant and tell these people that they have it back to front! I do not like being belittled. I do expect care from medical, professionals not dismissal.

So I have had to work out the difference between asthma and a panic attack.   Asthma is too little oxygen whereas in a panic attack the hyperventilation causes excess oxygen. Quite different! I carry a form that explains what happens to me when I am having an asthma attack.

I feel that I shouldn’t have to do this, but I have no great desire to leave this world yet, so I do my damnedest to make sure my unusual symptoms are legitimized and recognized. My asthma is odd, but it is still asthma.

My asthma is severe and life-threatening, and being dismissed is frustrating.

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Getty photo by Benjavisa