What you don’t see

One of the many frustrating things about cystic fibrosis is that the symptoms of an infection (even a very serious one) are not easily recognized by most people. It’s easy to make assumptions about someone when you don’t know the whole story.

It’s easy to make sarcastic comments about me “changing brands” or “switching to filters” when you hear me cough because you can’t see the infection raging in my lungs.

When I suddenly lose several pounds, it’s possible to assume I have an eating disorder. You don’t know the way my body struggles to absorb nutrients; you can’t tell that the meds I’ve been on have made me too sick to keep any food down.

It’s easy to assume that I’m lazy when you see the constant state of disaster my house is in. What you don’t know is that by the end of the day my body is usually too exhausted to do housework. You can’t see the way my heart wants to beat out of my chest every time I vacuum or feel the shortness of breath I feel when I move laundry from the washer to the dryer.

The fact that I come to work with a forced smile on my face must mean that I feel fine, right? You may not be so quick to assume that if you could see my 102 degree fever or the generous amounts of ibuprofen I’ve been popping every four hours just so I can work through the pain.

And I guess it’s easy to believe that the half-truths you tell and hurtful things you say about me will never make their way back to me. And even if they do, it’s not like I’ll care that much since this is all just a show I’m putting on, right? But you’ll never see the tears your words have caused.

There’s just so much you don’t see.

10 thoughts on “What you don’t see

  1. :(. So sorry Jen, some people are so insensitive. I completely understand. I often feel that people think I am lazy because “you look so healthy”. If they only knew, right? Hang in there!


  2. I SO hear you. Have you ever seen the website butyoudontlooksick.com? (The originator of the Spoon Theory, if you have seen that.) It's all about people with “hidden” but serious chronic diseases. It's helped me a lot over the years to realize that I'm not the only one who gets so frustrated and worked up about this issue.


  3. Such a simply put, yet powerful blog. I hate when people are so quick to judge. When I had to withdraw from spring semester this last school year, and I didn't work like everyone else and I could barely walk the bathroom from my bed I had so many people make rude comments. Unfortanely one was a roommate of mine and she always made comments about wishing she could lay in bed all day and not go to work or school. If only she knew how much it hurt and how much I wanted to be at school or work but when I tried walking around my lips and fingers would turn blue… Thank you for this blog. It always helps seeing people that are going through the same thing as you. I hope you get feeling better love.


  4. I hear you. I see that too with my MS, and with Zoey. I have heard that I keep her in a box. Umm, no I keep her healthy we hope. Don't let the Turkey's get you down, you are a strong person.


  5. I'm so sorry Jenny, I can't even being to comprehend how you feel on a daily basis. I complain a lot about things but knowing what you are going through I know I truly don't have anything to complain about. You are such a strong person and such an inspiration to me and know others. Hope you get feeling at least a little be better. Love you!


  6. I'm so, so sad that you're back in the hospital 😦 I, too, have felt the harsh judgement of others who lack a true understanding of the disease. Hell, even those with the disease sometimes judge. I'm sorry… Sending HUGE cyber-hugs!


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