By Sami Kirschbaum, APSW, MLSW

This blog post is a personal reflection based on my own experiences with Lyme disease and my thoughts regarding the case of Luigi, which has garnered significant attention and sparked mixed emotions within the Lyme community. I want to clarify that I am not suggesting or claiming that Luigi’s struggles are definitively related to Lyme disease, as there is no conclusive evidence to support this at this time.

Recently, the news of Luigi Mangione’s arrest as the prime suspect in the tragic death of UnitedHealth CEO Brian Thompson has captivated many.

Mangione, once celebrated as a leader of his Ivy League school with a master’s degree in computer science, was considered highly intelligent and promising.

He came from a wealthy family and had everything going for him, which makes his alleged involvement in such a horrific act all the more shocking. People are struggling to reconcile how someone with such a bright future could murder someone.

While we cannot yet say with certainty what led to Mangione’s alleged actions, reports indicate he had been grappling with several health challenges, including severe back pain, Lyme disease, potential Small Intestinal Bacterial Overgrowth (SIBO), and other serious conditions.

As more information emerges about his struggles with health, I want to share my own personal experiences with Lyme disease and the mental health challenges that many people in the tick-borne disease community face—challenges that are often misunderstood or overlooked.

The Hidden Impact of Lyme Disease

Lyme disease, caused by the Borrelia burgdorferi bacterium, is transmitted through tick bites. It can cause a wide range of symptoms, from fever and fatigue to severe joint pain and neurological issues. In cases of late-stage Lyme disease, or chronic Lyme disease, the symptoms can become even more debilitating and long-lasting.

For many, the physical pain is just the beginning. Lyme disease has a profound effect on the brain, causing what is often referred to as “brain fog,” memory problems, and difficulty concentrating.

The inflammation that Lyme disease causes in the brain and nervous system can lead to cognitive decline, mood changes, and other mental health concerns. These mental health symptoms are often overlooked, but they are a crucial part of the Lyme disease experience.

The Role of Inflammation in Mental Health

What many people don’t realize is that tick-borne diseases like Lyme disease cause significant inflammation in the brain. This inflammation can interfere with normal brain function, leading to mental health issues such as depression, anxiety, irritability, and even rage. These conditions are often misdiagnosed or attributed to the stress of living with a chronic illness, but they have a real physiological cause: neuroinflammation.

As Lyme disease progresses, the immune system’s response can lead to the release of inflammatory cytokines that affect brain activity. This can result in mood swings, cognitive dysfunction, and other emotional challenges.

For some, this inflammation can even trigger feelings of rage or uncontrollable emotional outbursts. While these reactions may seem inexplicable to others, they are part of the harsh reality for those living with Lyme disease.

The Struggles of Navigating Chronic Illness

Luigi Mangione’s reported struggles with multiple health conditions, including Lyme disease and SIBO, shed light on the immense challenge of navigating chronic illness. Managing multiple complex health conditions at once can be incredibly overwhelming. As with Lyme disease, when symptoms overlap or aren’t well understood by the medical community, it’s easy to feel lost and hopeless.

There were times when I felt like I was fighting a losing battle, trying to get doctors to take my symptoms seriously or offer a treatment that worked. The feeling of not being believed, or worse, being dismissed, can deepen the emotional pain and further contribute to mental health struggles. This experience of isolation—feeling like no one truly understands your suffering—can be devastating.

For Mangione, the combination of chronic health struggles, mental health concerns, and an inability to find relief may have led to a sense of desperation. While we cannot say for certain what led him to this point, in my personal opinion, I have been contemplating a theory today: perhaps Luigi was struggling physically and emotionally so much that he saw no way out of his suffering.

At the young age of 26, with his life seemingly consumed by unrelenting pain and no hope for relief, it’s possible he felt that his life was already over. This may have contributed to him making the tragic and calculated decision to harm a powerful figure, someone like Brian Thompson, who plays a crucial role in decisions about health care coverage for those suffering from chronic illnesses.

Feeling Hopeless

While this is just a theory, it’s not uncommon for individuals in chronic pain, especially those suffering from misunderstood or undiagnosed conditions like Lyme disease, to feel hopeless enough to consider drastic measures. The isolation, the constant search for relief, and the inability to find it can lead people to believe that their suffering will never end, and that they have no choice but to lash out or even contemplate ending their lives.

However, this theory does not condone any form of violence, and I want to make it clear that while mental health struggles are real, they should never lead to harm towards others. I also actively support client’s struggling with chronic pain as a way to mitigate the rates of suicide in the chronic illness community. We must continue to advocate for compassionate care for individuals suffering from chronic illness, as well as provide the mental health support that can help prevent such tragedies.

Acknowledging the Tragedy and Its Complexity

While reports suggest he was struggling with Lyme disease and other health concerns, we cannot attribute his actions solely to his illness. Mental health, chronic illness, and personal circumstances all contribute to behavior in complex ways, and we may never fully understand the factors that led to such a violent act.

It is crucial that we approach this situation with curiosity instead of certainty. There are countless individuals who suffer silently with chronic illness and mental health issues, and while their struggles may not lead to violence, the emotional toll of these conditions is real and should not be ignored.

At this time, I send my condolences to Brian Thompson and all of his loved ones. When such devastating events happen, they take a serious mental toll on those who are close to the victim. I respect the privacy of Mr. Thompson’s family, friends, and loved ones during this time of grief and send my love and strength to them as they mourn the loss of their loved one.

Turning Personal Pain Into Help for Others

In 2020, I underwent surgery without knowing I had Lyme disease, and that experience marked a turning point in my health. Post-surgery, all of my existing symptoms worsened, and I developed a dozen new ones. I was only 24 years old during this time.

I soon learned that surgeries, physical traumas, stress, and even major life events like childbirth can weaken the immune system, creating an environment where Lyme disease can thrive. Following the surgery, I struggled with significant cognitive decline, memory issues, and severe brain fog—symptoms that I hadn’t experienced before my procedure.

For me personally, the emotional and psychological toll of chronic illness was just as severe as the physical pain. I endured extreme fatigue, muscle aches, full-body joint pain, but it was the mental health struggles and cognitive decline that scared me the most.

Chronic illness, especially something as unpredictable and often invisible as Lyme disease or other long-term health conditions, can lead to a sense of hopelessness. While I never had thoughts of harming anyone else, I did experience moments of deep despair and rage. I felt disconnected from my body and mind, as though I was losing control and not myself.

Both neurological issues and my personal experience with chronic illness, including Small Intestinal Bacterial Overgrowth (SIBO), led me to a true belief that I was better off not being alive. That’s how horrible I physically felt, and my brain could not handle the immense pain anymore.

Emotional toll

The emotional toll of constantly fighting pain that didn’t have a clear resolution—feeling misunderstood by the medical community, and struggling with brain fog—left me wondering if I could endure it for much longer. It was as if my mind and body were at war with each other, and I couldn’t escape either battlefield.

I am a mental health professional with a formal education and extensive knowledge of coping skills. I am trauma-informed and have worked with many individuals who struggle with emotional and mental health challenges. Despite my training and expertise, I still suffered greatly from the neurological aspects of an active Lyme disease infection and the mental health manifestations it caused.

Even as someone who knew the strategies to cope with trauma, depression, and anxiety, I found myself being dismissed by doctors or, worse, shamed for being the cause of my illness. This lack of validation and the feeling of being ignored or blamed compounded my suffering, and at times, it led me into deep suicidal ideation.

This experience was a stark reminder that the pain and confusion that come with these long-term conditions—coupled with the emotional toll of not being taken seriously—can erode your mental health and sense of self, no matter how much training or understanding you might have. It made me realize how critical it is for everyone, regardless of their background or expertise, to have access to compassionate care and support, especially when dealing with complex and often invisible health issues.

My mission now is to help others navigate these challenges and find healing—both physical and emotional. It’s crucial that people who are struggling with chronic illnesses like Lyme disease receive the support they need to address both their physical and mental health. By sharing our stories and offering understanding, we can foster a community of compassion and healing.

Conclusion

The tragic situation involving Luigi Mangione highlights the profound impact that chronic illness, particularly Lyme disease, can have on mental health. The inflammation in the brain caused by tick-borne diseases like Lyme disease can lead to depression, anxiety, rage, and other mental health challenges that are often overlooked. These issues are more common than not in the tick-borne disease community, and it is important to approach the discussion with empathy and understanding.

While we may never fully understand the factors that led to the tragic events involving Mangione, it’s essential that we continue to raise awareness about the mental health impacts of chronic illness in general and offer support to those who are struggling. Lyme disease doesn’t just affect the body—it can affect the mind as well. And by acknowledging these struggles, we can help prevent further harm and support those on the road to healing.

Sami Kirschbaum, APSW, MLSW,  is a Certified Brainspotting Therapist and Advanced Practice Social Worker. She is the founder of the Lyme Resilience Collective, an organization dedicated to helping patients with chronic Lyme disease navigate and heal from trauma.