A Lifetime in My Skin: Jonathan’s Story

For some, a medical condition is something they grow out of. For many nevus owners, it is something they grow with. For Jonathan, living with a nevus has been a lifelong journey…one that began in infancy and continues into adulthood. His story reflects not only the physical realities of living with a visible difference, but also the emotional strength required to navigate a world that often does not understand.

“From the time I was 2 months old I have had my Nevus. I am now 49 and still have Nevus.”

While he knows it has always been part of him, the exact medical classification has been lost to time. His mother recalls that it may have been nevus verrucous, though she is no longer certain. What is certain is the impact it has had- physically, emotionally, and socially-over nearly five decades.

Childhood Surgeries and Early Trauma

At just nine years old, Jonathan was introduced to the world of surgical intervention. Like many children with visible differences, the promise of “removal” carried hope... but also fear.

“When I was 9 I had my first surgery to try and remove it all,” he recalls. What followed was far more intense than a single procedure. “It would take a number of surgeries.. I was not prepared for the pain it would cause.”

The treatments he underwent were extensive and invasive by today’s standards. Laser therapy was performed around his left eye, while dermabrasion was used on his left cheek. Lesions on his neck were surgically removed, and chemical treatments were applied to his chest and trunk, which are primarily on his left side. In addition, he has “a very large patch on my lower back that extends up from the left to the right side.”

These early experiences left both physical and emotional marks, but they also provided insight that continues to inform his care decades later.

Searching for Answers as an Adult

Today, Jonathan is once again working closely with a physician to manage his nevus using modern laser techniques. While current treatments offer temporary improvement, they do not provide permanence.

“I am currently working with a doctor that is trying laser surgery again,” he shares. “It seems to work but only for a few months before they grow back.”

What intrigues both Jonathan and his doctor is the contrast between past and present results. He explains that areas treated with a chemical solution during childhood have remained clear. “She is very interested in knowing what the acid was that the doctor used when I was 9, because in those areas where he used it, it is completely clear and not growing back.”

His willingness to contribute to future progress is striking.

“I even told her if she wanted to try anything that she thinks will work, I will be her guinea pig.”

It’s a statement that reflects not only his own desire for relief, but also a hope that future generations may benefit from his experiences.

Living With Public Reactions

Beyond the medical journey lies an emotional one... perhaps even more challenging. Living with a visible nevus has meant enduring constant attention, often uninvited and unkind.

“I have had this for 49 years, which is my entire life,” Jonathan says. “And for my entire life I have dealt with kids in my schools and out in public, even today, who look at me and stare and say very mean things.”

Some moments have been especially painful. He describes instances when children reacted with fear, saying, “Some kids even cry and scream and even call me a monster… They ask what’s wrong and point at me.”

In those moments, Jonathan has learned to protect himself emotionally, even when it hurts deeply. “It hurts so bad,” he admits, “but all I can do to keep from crying is smile and tell them it’s a birthmark.”

This emotional labor, performed repeatedly over a lifetime, has taken its toll. “This has been very hard to go through in life,” he shares. “I wish there was some sort of solution of some kind to make it all go away.”

Maintenance, Not a Cure

While a cure does not exist, Jonathan has found ways to manage his condition, especially as someone who works with the public and wants to feel comfortable in daily interactions.

“I try to keep maintenance done on them so they don’t get so thick.”

One of the primary tools in his current care plan is CO₂ laser treatment. He offers a detailed explanation to help others understand what the process involves and what to expect.

“The process she does for me is she will numb the areas she will be working on with numbing cream,” Jonathan explains. “Some of the larger areas she will numb with lidocaine shots.” After allowing the numbing agents to take effect, she provides laughing gas to help keep him comfortable during the procedure.

The sensation itself is intense but brief. “It feels like heat,” he says. “The best way I can describe it is like being popped by a rubber band.”

Healing is gradual and requires patience. Immediately after treatment, the nevus is not completely gone, and some bleeding may occur. Once the numbing wears off, the discomfort feels similar to a severe sunburn, lasting about an hour. Proper aftercare, keeping the area moist with Vaseline or Aquaphor and gently cleansing during showers, helps the healing process along.

“You will notice some will fall off,” he explains. “The sting of the laser will still hurt, but after about 2 or 3 days the sting will be gone.” Within a week, he often sees visible improvement, though heavier areas may require additional sessions.

Because there is no cure, maintenance remains ongoing. “You will have to keep maintenance up on it,” Jonathan says, typically every six to twelve months.

A Story of Endurance

Jonathan’s story is not defined by procedures alone. It is a story of endurance, vulnerability, and quiet courage- of showing up in the world despite the troubles that he faces.

By sharing his experience, Jonathan gives voice to adults who have lived with nevus conditions for decades and offers our community valuable insight into a diagnosis that is different from Congenital Melanocytic Nevus. At Nevus Outreach, we welcome individuals and families affected by all nevus conditions, recognizing that every story deepens our collective understanding. We are deeply grateful to Jonathan for his openness and willingness to share his journey, helping us learn, grow, and strengthen our community through lived experience. If you or someone you love lives with a nevus, of any type, you are not alone.

---

💡 Want to connect with other CMN families, find trusted resources, or support research? Visit Nevus Outreach to learn more, join our community, share your story, or make a gift today.