For Rare Disease Day 2018 we asked the PCD (Primary Ciliary Dyskinesia) community, “What are your things NOT to say to a person with PCD?” Here are their responses. Some closely related responses have not been included in this list.
- My ENT said, “We need to get your hyper-secretions in your sinuses thinned out, so your cilia can do their job and move the secretions out of your sinuses.”
- My Respiratory Therapist said, “Breath in through your nose, so that your cilia can filter out germs and bacteria as well as moisten the air going into your lungs. Moist air helps the lung cilia work optimally too.”
- “Blow your nose.”, my daughter hates that.
- The gym teacher says, "Come on you can do better than that". I say let me tape a straw to your mouth and nose and you run. 🤣
- "You sound like you have a bad cold" which is similar to "Wow what a horrible cough". And it's always the same people over and over again which is when I get annoyed, one time is not harmless. I don't look sick. I don't expect everyone to know my background, but when you've said it 8 times in 3 days wake up.
- “If you're sick, you should stay home!", but then we’d never go out. 🙄
- “Well, at least it’s not CF.” (True, but minimizing the real long term medical effects and feelings of PCD is really obnoxious. I am happy my son doesn’t have CF, but it’s no cake walk having a child with PCD).
- When a provider says, “PCD? What’s that?”
- “I bet my doctor can cure you.”
- “Just take some Honey.”
- “Eat this magical bush or drink this tea.” Lol
- “Do you smoke?”
- So many variations of; “You should lay off the smoking, that’s what you get for smoking, etc”
- “It’s not like you had surgery.”
- From doctors " What do you mean that medicine doesn't work how do you know?"
- My pharmacist lectured me that too much ciprodex would cause the cilia to not work....after I told her they didn't work right to begin with.
- “Just use XYZ essential oil/herb/cleanse and you will be as good as new!!”
- “But you look so healthy!”
- From the school regarding my kids, “Well, we just need to make sure they are here more often and not just staying home with a sniffle.”
- “Can you just stop blowing your nose?!”
- “You go to the doctor too much!”
- "Do you want a cough drop?”
- “Breathe in through your nose and out through your mouth" (the last is said all the time during exercise. I'm like how the heck do I do that when the exercise makes my nose run??)
- Direct quote from my (former) chiropractor... “You know, if you have a miscarriage, it’s God’s way of cleansing the body and it could cure your PCD.”
- “You should really see a doctor about that cough.”
- “I have asthma too...” Um I wish it was just asthma..
- I get, “Are you sure it’s not asthma?”
- “And I see here he must have a little asthma?” 🙄
- “I’m sure she’ll grow out of it. My daughter was sick a lot when she was that age and she’s fine now.”
- “Do you think she’ll grow out of it?” Me, “No she’ll never grow out of it.” Them, “but maybe she will!” 😡
- “When he gets better...”
- When I was in school I played soccer and my team had to run miles but my coach had me run laps at my own pace while my team took their route around the sports complex for safety reasons and to be near my inhaler. Members on my team would always say "You're not sick! You're just too lazy to run!"
- Lately the one that gets me is "When are you having kids?" Since most don't realize the miscarriages and complications related to PCD and pregnancies.
- “You're not getting younger, you need to start your family!". At the time, I had a fridge full of hormones that I was injecting into my stomach every day, among other things (blood draws every other day, more hormones in the butt, lots of ultrasounds). Some people who get pregnant easily just don't get it.
- "Try a gluten free diet, it will change his life"
- My husband's old boss could not understand how sick I was and would always tell him "It's just allergies!”
- From doctors, “Are you sure you just don’t have really bad asthma? Ummmm. Let’s see... if my ears and sinuses are also my lungs, then maybe?
- We have one child with PCD. Someone told me we should have had more, in case, you know, something happens to her. 😒
- My personal pet peeve: "You should cut out dairy. My kids got ear infections too until they cut out dairy."
- “Oh it can’t hurt to try xyz...” Well it certainly has not changed things at all. I cut out all dairy. No change.
- “Just go to (insert holistic Dr here) because your sons on too many antibiotics and needs to get off of them and his inhaler.”
- Every new doctor, “Let's run xyz test/scan/blooddraw just in case." Let's not, we've ran them all 3 times and he's only 5. It's a diagnosis even if you have only ever heard of it.
- People tell me all the time that she gets sick because, she needs germs. “It won’t kill her.”🤬
- “Let them play in the dirt!” is one of my personal favorites.
- “Are you contagious!”
- I get.... “Oh he’s sick again? Wasn’t he just feeling bad. I’m sure as time passes and he “grows “ things will be better!!”
- "Yeah I have that sinus stuff too. It’s bad. Just take a hot shower. That will help!” 😡😡 ugh
- "It could be so much worse!" I am obviously thankful it's not worse, but coming from someone who has no clue what she and we go through it's totally annoying.
- "How is your daughter doing...is she better? Yes she does have days that she feels pretty good, but is she ever "better"....nope...not unless they've heard of a cure that I haven't...🙄
- I had a nurse who didn't read her file ask, "Why are you calling us for just a fever and stuffy nose?"
- “So did you give this to him?”
- “So now that you know genetics diseases run in your family you should not have any More kids!” 😤
- “You should put her name on the transplant list now! Then when you need it, your name will be in there, at the top.” 🤦♀️ That’s not how the system works....nor is a transplant an easy cure-all, nor does everyone qualify for a transplant, etc....
- “You need to be vegan!”
- “Your body is too acidic; that’s why you are sick all of the time! And have rheumatoid arthritis as well.”
- “If you just gave up all animal products, you would be so much better off!
- “You probably wouldn’t be so sick if your mom had breast fed you”
- “At least he doesn’t have Cancer!” Really. 😑
A PCD family member sent us this statement, and we think it is a fitting way to end our posting for Rare Disease Day 2018. “I think all of these things reinforce how necessary and vital the PCD community is. People DO NOT understand what it's like to live this life. So the importance of a community you can lean on through the hard days and celebrate the victories with can't be understate.”
Happy Rare Disease Day 2018! Are you wearing your blue jeans today? “Hope it’s in my genes!
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