I can’t tell you how many times people have written to me telling me that their doctors can’t figure their asthma out or that they have nothing more to offer them. With over 25 million asthmatics in the US alone, there’s bound to be a few who of us who don’t fit the typical asthma mold.
A wise old Pulmononogist, who in response to my frustration over my own asthma care, once said to me, ” Steve..you have to remember, that YOU’RE the one who’s different, you’re the oddball, not the physicians who are taking care of you”. I was kinda taken a back when he first told me that, but 5 years later and 5 years of even more frustration, I finally understand what he meant. I get it now.
In defense of medical doctors, we as patients who have complex and/or “unusual” asthma, often have unrealistic expectations from our medical providers. We think that doctors should be able to fix everything. The fact is, there’s only so much that can be done to treat asthma in general, let alone therapies for us oddball types. You basically have steroids for inflammation and bronchodilators and/or thermoplasty for those with super twitchy lungs.There’s really nothing else out there. So, if you have a type of asthma which doesn’t respond well to any of the above, you’re basically outta luck, which is NOT the doctors fault. Some of the newer biologics are starting to hit the market, but they are extremely expensive and are designed primarily for those with eosinophilic asthma, which many of us don’t have.
Ah, but as hopeless as things might seem right now for those of us with extremely bizarre, atypical or difficult to treat asthma, Im actually encouraged that discussions like this one are taking place more and more. There seems to be a broader awareness now that rare and/or poorly understood types of asthma do exist. Physicians seem much less likely nowadays to lump all asthmatic patients under a single label. With the efforts of asthma researchers like Sally Wenzel, John Fahy and many others, you’re hearing more and more about asthma endotypes and targeted therapies for those with severe asthma. There seems to be a better understanding that not all asthma is the same. Believe me, as someone who has lived with the disease for nearly 60 years and suffered a lot of medical complications because I should have fit the mold, but didn’t, that’s a huge change in perception, and most of that positive change has come in just the last couple of years.
So if you fit into the oddball category of asthma, my advice is to convert some of that frustration into advocacy. Instead of whining, learn as much as you can about your particular type of asthma and then pass it on to others. And yes, that includes educating your Physicians as well. Give them a break, they’re human just like the rest of us and can’t possibly know all there is to know about every type of disease. Give yourself a break as well. You’re not an oddball, you’re type of asthma is rare, which makes you special.