Weighing My Desire to Get a Tattoo Against the Potential Risks

Why this CF patient and transplant recipient finds value in tattoos

Nicole Kohr avatar

by Nicole Kohr |

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A graphic depicting a woman on a stage with the words

I want a tattoo, and my desire began with a scar.

I touched on this subject in my column “Learning to Embrace My Poor Unfortunate Holes.” I wrote about my scars, the story behind each of them, and how I’ve grown to love them. However, I want to dive a little deeper. Not only am I proud of my scars and the resilience they represent, but I sometimes pray for more. No, I do not want to endure any more pain or trauma, but I like having proof.

I’ve spent the past month or so dissolving in my own madness, trying to diagnose myself with something that causes high fevers and other ambiguous symptoms. As a cystic fibrosis (CF) patient and a bilateral lung transplant recipient, there are many reasons why I might feel ill. It could be medicine-related, chronic illness-related, or stem from my immunosuppression. Unfortunately, no matter which symptom I followed over the past month, the bloodwork did not support my plea for help. Last Monday, a group of bruises finally raised a red flag.

Paired with the high fevers and flu-like symptoms, my doctor insisted I go to the emergency room (again). I’ve always been an easy bruiser, especially pre-transplant. The combination of symptoms, particularly those that were making their way to the outside, alerted my team to something more troublesome. I was admitted to the hospital after my bloodwork showed that my white blood cell count was extremely low. A CT scan showed further proof of a deep infection in my lungs and sinuses.

So, what does this have to do with a tattoo?

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Choosing Scars, One Tattoo at a Time

Why I might get a tattoo

One, proof is invaluable when it comes to invisible diseases like CF. The phrase “but you don’t look sick” is flattering but unhelpful when I’m drowning in vague symptoms. It’s the same reason my mother documented my symptoms prior to my CF diagnosis, and why I enjoyed decorating my bedroom walls with displays of who I wanted to be in the public eye. Perhaps tattoos are equally valuable for storytelling.

Two, a tattoo is not simply a body modification made with ink. Tattoos appeal to me as someone who has very little energy but wants to express who I am on the inside. I can expend little energy while advocating for something big. It’s similar to how a simple black-and-blue mark can put my invisible symptoms on the outside.

Three, I can choose what my tattoo looks like and where it’s placed. A bundle of roses on my lower back sounds attractive because it’s within my control.

Four, I like all of my friends’ tattoos and the idea of joining their exclusive club. Not to mention, the pain will likely be minimal compared with other procedures I’ve had done. Why not allow this pain to end with a reward?

Why I might not get a tattoo

With that said, there are reasons why I shouldn’t get a tattoo. For one, I’m at a greater risk for infection and rejection.

My anti-rejection medications help prevent my body from attacking my lungs by “turning off” my immune system. An active immune system would view my new lungs as germs and attempt to expel them. This leaves me with the difficult task of moderating my body’s immunity manually: Wear masks, wash hands, avoid infection. A device such as a needle or a foreign substance like ink can easily lead to an infection, same as a glass of tap water.

Two, is it worth affecting my family? For me, an infection can lead to endless hospital stays and a shorter pipeline of available antibiotics. Is a bunch of roses on my lower back worth the risk, especially after everything I endured leading up to transplant? How could I possibly burden myself and my family with an infection on purpose?

Three, I wouldn’t put too much thought into a tattoo. Something symbolic or meaningful is too hard to pin down, so I’d likely just get something that makes me laugh. What if I got an Ursula the Sea Witch tattoo? That would really bring this column full circle, along with my poor unfortunate holes.

I love tattoos. If a picture is worth a thousand words, imagine the diagnostic or advocacy possibilities. More importantly, I like having a proof of concept for both diagnostic and identity purposes. I want to reserve my energy and preserve my identity while maintaining a safe space for my lungs to thrive. Perhaps it’s worth the risk, and I’ll treat myself to a very risky 30th birthday present. Or, I’ll order a custom rub-on tattoo.

This ongoing battle between living and surviving just results in one question: to tattoo or not to tattoo?

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.


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