I’m giving loved ones permission to remark on my CF symptoms

“You smell sick. I literally can smell the Pseudomonas.”

I was a young teenager, and in classic teenager fashion, Mom’s comment aggravated me. For one, no teenager haunted by puberty’s horrors warmly welcomes a parent’s wrinkle-nosed remark about odor. Second, in all my stubborn, hormone-raging years, I worked hard to pretend I wasn’t sick, so hard that I could convince even myself. Because I wanted to be (teenaged angsty sigh) normal. Mom’s supersmell shattered that carefully curated illusion.

Because she was never wrong.

There, I said it. My adulthood has been a series of humiliations affirming my parents’ rightness.

Mom’s supersmell is a bit of a mystery because her nose isn’t exactly super outside of this ability. As a carrier of the cystic fibrosis (CF) gene, she has chronic sinus issues and can’t smell much at all. Yet a whiff of a microscopic bacterium embedded deep in my airways, and her nose perks up swift as a detection dog’s. (Is there a clinical study about moms detecting CF smells? Get on it!)

She can pick up on all my other subtle symptoms, too, including fatigue that delays my speech by nanoseconds or a single-decibel alteration in my cough’s volume. I wish she could observe me daily now. Alas, we live in different houses.

Now I accidentally pretend I’m healthy

I still tend to live as though I’m not sick, despite long ago growing out of consciously trying to pretend I’m healthy when I’m not, because it can take me weeks to realize I even have symptoms.

Because I don’t realize I’m sick, I try to live out my normal life pace instead of resting, until I eventually crash and visit a doctor. Usually, I’ll then have a hindsight epiphany: “Wow, come to think of it, I’ve been feeling cruddy for weeks now! I thought I was just having an off day, then another, then another, then 30 more.”

If you’re a generally healthy person reading this, that might sound silly.

Think of it this way: Symptoms such as fatigue (which accompanies many if not most CF health problems) slip beneath notice simply because fatigue makes thinking difficult. Brain fog is a nice illustrative term because in thick fog you can’t see beyond the immediate area, and even what’s in front of you may lack definition. Similarly, picking up on the gradual development of a new symptom is complicated when you can’t remember your yesterdays or focus on the now.

Atop this, if you already lack a well-defined health baseline because of CF symptoms’ fluctuating nature, you’re comparing sick with sicker rather than healthy with sick, and so perceived differences may be less stark. I don’t have a strong track record of picking up on my symptom subtleties as Mom can.

Granting permission for others to comment on my health

Many teenagers don’t feel their boundaries are respected. They haven’t given permission for people to remark on their body odors. In adulthood, though, I find the opposite problem at play: People feel they don’t have permission to remark on changes they see in their peers, so they stay mum out of respect.

Of course it’s typically kind to withhold comment on another person’s weight gain or loss, or on how slow or confused their thinking is, or how annoyingly loud their cough is. But often, others are going to pick up on what we don’t. I can’t number how many times I’ve shared a diagnosis with someone, only for them to say, “Wow, I’d been wondering why you were being like that!”

I’ve gotten in the habit of giving loved ones permission to remark on any changes they notice in my body and mind. While at first I might be ashamed to realize others notice symptoms I’ve been ignorant of — especially symptoms that annoy or inconvenience others — I’m old enough to know it’s better to be sick and embarrassed than increasingly sicker and ignorant.

Set up symptom-monitoring systems

You could draw a few lessons from my experience:

• If a loved one has had a great track record in helping you with your health, say thank you for the ways they’ve helped you get this far.
• Take this opportunity to do a body scan: Does anything feel off base from your norm, however complex your norm is?
• Would it benefit you to give loved ones permission to comment on any changes they notice in your body and mind? Or is there another symptom-tracking system you could implement, like journaling bodily sensations each day?

The earlier we catch our symptoms, the earlier our quality of life can improve. I’d say that’s worth most costs, including awkwardly asking your mom to take a strong whiff of your scent.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.