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The Extended
CF Familia

Invisible Disability

by Marieliz L.

Patient testimonials represent individual experiences and opinions of the individual patient. Experiences may vary.

There is difficulty in being invisible because usually what no one sees they do not believe, and when you have an invisible disability like cystic fibrosis (CF), usually no one believes you are sick or even disabled.

I’ve had that experience my entire life and frankly, it gets old. Yet, it’s something that I am faced with even now. The only time I can justify myself parking in a disabled spot are the days when I need my oxygen for extra support, using my walker, or on IVs and people can see the port bandaged.

On the days when I am just me, I get looks and disapproving glances my way because outside I look like everyone else, I look healthy and that makes me look like a person who is using the handicap spot out of being a selfish person. Little do they know that inside I am extremely sick to the point where my CF has disabled me. I did not choose this and would not choose this illness on anyone because it comes with its fair share of baggage that seems to surprise me every year with an evolution of new battles that I have to overcome or learn to live with.

I struggle to breathe almost daily because CF has created a home within my lungs and does not wish to simply stay put, it chooses to grow inside my lungs and make my life more and more miserable. Inviting its friends, such as arthritis, neuropathy, fibromyalgia, and a barrage of other secondary diseases that seem to overtake my life. I am in literal constant pain every moment of everyday and there is no relief. There is no respite or moment where I can simply live a day without discomfort.

Daily interior battle

Obviously, it’s an interior battle and no one can see it because I’ve lived with pain for so long, my threshold is high, and I have managed to coexist with pain.
There are moments when the pain overtakes me and I can’t walk or move around and no one is around to see that because I can’t be outside. I can’t be outside because I am physically unable to. In those moments, I am happy to at least sit by the window watching life pass me by and listen to the birds sing their songs, watching the clouds create their art in the sky. If I can muster the strength and use my walker in those moments where pain thrives, I will because I’m strong, but I always live in pain and pain is invisible most times.

I like to do my makeup and look my best because there are days when I’m pale and days when my eyes are dark and exhausted from yet another night of insomnia and battling CF that I use makeup to hide that. Everyone who sees me always say “you don’t look sick”, which is a line I’ve heard a thousand times over. The makeup isn’t to hide myself from anyone or hide what CF does to me; it makes me happy and helps me be confident in moments when I feel without.

My pains are horrible to the point where brushing my hair is agonizing. Sometimes, the intense pain only allows me to wear my hair in a loose bun, and that’s also invisible because it may seem like a regular loose bun. People may see that I wear silly foam slippers but the pain my feet hide is a secret, and those shoes are all I can wear that don’t make my feet feel like they are on fire and walking on glass due to neuropathy.
CF is invisible most time and when its visible people pity you and say, “I hope you feel better” and while I welcome kind words of encouragement, like anyone, I don’t like to be pitied. I have battled my entire life with an invisible disease that dominates my every waking moment.

A warrior behind doors

I love hearing that those with CF are warriors and strong fighters because it’s a fact that can be proven a million times over. We fight this disease most times in the privacy of our homes and hospital rooms, we fight to the point of exhaustion and moments where we feel like we have no strength left. I bring awareness to a disease that likes to be secret, and I’ll always fight it, but it has and continues to cause me great suffering which many don’t understand unless you live it.

Living with my invisible disability doesn’t render me weak or feeble, it just taught me that I have to live differently and that’s okay. CF has helped me appreciate many aspects of my life and the simple joys I can find, where I fight my invisible CF behind closed doors, I can appreciate how much the birds sing as if I’m out there myself with the rest of the world being visible.

Campaign Videos

This Campaign Anthem video amplifies the awareness of Latinos with Cystic Fibrosis.

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Resource Links

Support Group for the Spanish-Speaking CF Community: Second Wednesday of Every Month

Led by Marilyn Calderon, LICSW
The group meets on the second Wednesday of every month from 5:00 to 6:00 pm PT (8:00 to 9:00 pm ET), and addresses the unique issues faced by Hispanic/Latinx individuals and families affected by CF. The group is open to adults with CF as well as family members of adults and children with CF. The group meetings are held in Spanish and facilitated by Marilyn Calderon, LICSW.

To register, click here. Please allow 3-4 hours before the meeting to register.

Sponsored by Vertex Pharmaceuticals, Chiesi USA, Genentech, Viatris, Gilead Sciences, and private donors.