A couple weeks ago, I wrote about misunderstandings within the CF community. But what about misunderstandings projected into the community from the outside? If you’re a non-CFer, keep these things in mind when interacting with someone who has the disease.
You might not feel sick, but that doesn’t mean you can’t get us sick.
You might not feel sick. Not even a sniffle. But people with healthy lungs often harbor bacteria they don’t feel, but which could kill CF patients, such as pseudomonas or nontuberculosis mycobacteria. So, don’t think we’re being paranoid if we take hygiene precautions around you, even if you aren’t “sick.” A sniffle for you could be pneumonia for us if we catch your germs.
This extends to viruses. I have many friends who say they don’t get the flu shot because they’d rather get sick for a few days than get poked by a vaccine. I’m not going to preach herd immunity to you, but please at least warn a CFer if you’ve refused the vaccine and are feeling early symptoms of sickness. Flus, like bacteria, can kill a CFer.
Being unable to gain weight isn’t a good thing.
The most-repeated joke when I describe CF? “You don’t gain weight easily? I wish I had that problem!” Trust me, when the lack of weight gain is because of nausea, disinterest in food, burning too many calories breathing, energy spent fighting infections, and other digestive issues, you don’t want that problem.
Not being able to get out of bed because you’re too malnourished isn’t funny, and neither is being rejected from a life-saving transplant because you don’t weigh enough. Many are okay with joking about it; I am sometimes. But be sensitive to the situation and follow the lead of the sufferer.
Hospitalizations are not vacations.
I was a source of much jealousy in high school because of my repeated “two-week vacations.” Most friends thought hospitalizations were times of rest and plentiful TV watching while they labored away at homework and exam studies.
In reality, many patients barely sleep a wink in the hospital because of nurses constantly walking in and out of the room, IV alarms shrieking, and babies crying down the hall. Hospitalizations often involve plenty of poking and prodding and a lack of privacy. And the make-up classwork and homework are still waiting once released from the hospital. The worst torture during my hospitalizations while I lived in Hawaii? No Wi-Fi and terrible cell service.
We might be used to it to an extent, but not totally.
People often assume CF patients are “used to” the life struggles gifted by the disease. This is true to an extent, but that doesn’t mean we don’t still hurt or feel isolated from society. If your buddy with CF is in the hospital, ask them if you can visit or Facetime with them. Despite never being left alone by medical staff, the hospital is a lonely place. I went from getting a couple dozen friends to visit during my first hospitalizations, to getting one or two despite having more friends than I did before. My hospitalizations were “routine” by the time I reached my 20s, but the disease only got scarier. Any support I could get helped.
Wikipedia does not give the full picture of our disease.
Ask us about our disease rather than googling it (if the CFer is open about their disease). We would rather provide our own narrative of the disease than have you read a Wikipedia article and think you understand it all. The Wikipedia article contains outdated information and sweeping generalizations that don’t apply to every CFer. Let us explain the disease on our own terms. Some parts are uncomfortable with us so we’d rather you not know. While information about the disease is public, our diseased life should be private if we choose it to be. We didn’t choose to have the darn thing.