How Is My Asthma Invisible?

It’s invisible to those who don’t see me using my controller inhaler every morning and every night. This quick task (EVERY morning and EVERY night) helps control the swelling in my lungs. So, that helps if I get sick and get a cold on top of already swollen lungs – hello pneumonia!

It’s invisible because people can’t see the severe pain when your lungs feel like they are ON FIRE when you are battling pneumonia. Sometimes every breath you take is painful.

It’s invisible to those who don’t see me “fumble in my purse” or “check my phone” at the elevator as an excuse to avoid riding up the elevator with someone with REALLY strong perfume (one of my asthma triggers.) “No worries – I’ll grab the next one!” I say if the person offers to hold the door for me. Sometimes I’ll say, “I can’t ride in the elevator with you because your perfume is so strong that it will cause an asthma attack for me.”  Other times, I just don’t want to have to explain my situation (again), so I’ll stall for time and catch the next elevator.

It’s invisible to those who don’t see me at one of my frequent trips to my pharmacy. The pharmacist and the pharmacy techs know us personally and we are one of their favorite families because we are kind and love to chat with them. They in turn take care of us. Most people don’t know how much we spend per month on controller inhalers and allergy medicine (and if it’s time for a new rescue inhaler, or Albuterol vials for the nebulizer, add that to the mix.)

It’s invisible to those who don’t see us worry about how much the next batch of prescriptions will cost.  My middle son needed biologic injections to try to control his severe asthma (after 8 hospitalizations). The serum was $1,500 a month for his injections. Since that’s less expensive than ANOTHER hospitalization, our insurance company decided to cover the cost of the injections. Our co-pay was $150 a month (on top of the other allergy and asthma medicine for 5 people in my family). But we applied for copay assistance and found a foundation that would cover the cost of our co-pays during the  7 years he was on that treatment plan.

It’s invisible to those who see me at the gas pump at 10:00 at night and don’t realize that I’ve just come from a long day at the hospital, sitting beside my son or daughter’s bedside – nervously monitoring their oxygen level, IV, and breathing treatments during one of their 12 stays for pneumonia/smoke from wildfires. While I am headed home to take care of our other two kids, Hubster is starting his “hospital shift” of staying by our son or daughter’s bedside.

It’s invisible to the neighbors who don’t notice our lawn needs to be mowed/sidewalks need to be cleared of snow/garbage cans need to be taken to the curb or brought back in. Who has time for those things when you are very ill with another bout of pneumonia or have a child in the hospital with pneumonia (again….)

It’s invisible unless someone sees me packing for a trip. Controller inhaler and spacer? Check. Rescue inhaler and spacer? Check. Nebulizer (compressor unit, nebulizer kit and tubing, Albuterol vials), check. Finding location of closest after-hours clinic (just in case….)? check.

It’s invisible unless someone sees me at home taking care of my equipment. Cleaning my inhalers (they tend to clog), cleaning my spacers (they get dirty and can also can inhibit air flow), cleaning the nebulizer canister after each use and sterilizing it once a week.

I don’t wear a cast, use a cane or wheelchair, or “look” like I have a disease. But I do. Asthma is an invisible disease.

But I can live a long and healthy life if I learn how to control my asthma and my kid’s asthma.

To quote our family mantra, “Things Could Always Be Worse.”

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Asthma.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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