The Journey to Joy: My Struggles With Health Anxiety Obsessive-Compulsive Disorder

My battle with health anxiety obsessive-compulsive disorder (OCD) began insidiously, with little warning. Until its onset, I enjoyed a quiet life with my husband and our healthy son, a stable job and the companionship of many loyal friends. I was working as a clinical nurse specialist and extracorporeal membrane oxygenation (ECMO) coordinator for nine and a half years, providing care to patients with ECMO and other types of mechanical circulatory support (MCS). It was a population I loved. Although our patient outcomes didn’t always evolve into what we hoped, it was a tremendous honor to provide support, compassionate care and comfort to patients and families during the most vulnerable times of their lives. When health anxiety OCD hit me like a ton of bricks, I had no idea what was happening.

It started when I discovered a swollen lymph node in my neck a few months after I was sick with influenza A. When the lymphadenopathy persisted for a few months, I thought it could be swollen from when I was sick, so I’d just keep an eye on it. “Keeping an eye on it” turned into checking all lymph node chains daily for changes in sizes and shapes. It progressed to palpating lymph nodes multiple times an hour. Eventually, I turned to Google to confirm what I already knew – prolonged lymphadenopathy could be chronic and harmless, or it could be a sign of stage four lymphoma and imminent death.

Over the next few weeks, I spent multiple hours every day scrolling through articles about five-year survival rates for various types of lymphoma. I found myself rereading the same articles, hoping statistics had changed. I started to vigorously check my body for other signs of lymphoma. I eventually went to the doctor’s office, and they ordered an ultrasound of my neck. The ultrasound showed enlarged but morphologically normal nodes and my bloodwork was clean. I was told to follow up with otolaryngology for reassurance. I remember reading the provider’s note in MyChart in complete disbelief. I thought: What does this mean? Did they miss something? Is there an insidious terminal process going on inside my body? Should they have ordered an ultrasound of the other side of my neck for comparison? I should get follow-up bloodwork. I see patients with rare diagnoses all the time. I need to know with 100% certainty that I do not have lymphoma or some other rare type of cancer.

I continued to marinate in thoughts of doom for weeks until I started to have panic attacks. I had never experienced a panic attack, so I didn’t realize what was happening at first. I would suddenly experience tremors and an intense feeling that I was going to pass out. I couldn’t eat. I lost weight. In addition to daytime panic attacks, I started to have panic attacks as soon as I climbed into bed at night because I knew I would have nightmares about death if I fell asleep. My heart would race, my fingers and toes would go numb, and I would feel riddled with fear. I was consumed with worry, every hour of every day. People would be talking to me, and I couldn’t focus on what they were saying. All I could think about was that I might be dying, and here I was having a conversation about something irrelevant and doing nothing about my imminent death. After weeks of nausea, insomnia, palpitations, near syncope and feelings of doom, I went to see my primary care physician (PCP). He reassured me that although my lymph nodes were enlarged, it is very likely my normal and imaging will never be able to provide me with 100% certainty. Really, I wanted my PCP to write me a note that read, “You will grow to be 95, see your son graduate and get married. You will never develop any illness and are destined to live happily ever after.” But his reassurance was enough to help me find peace for a few weeks.

After a brief break from persistent obsessive thoughts, I soon began to have new symptoms that reignited somatic worries. I started to experience migraines. I again consulted Dr. Google, despite knowing better, since Google often highlights rare health conditions and tragic outcomes for young people. As expected, I found articles suggesting that headaches are a sign your body is not tolerating sleep deprivation, caffeine withdrawal or tension … or it can be a sign of a developing brain tumor, neurological disease and certain death. My anxiety was wreaking havoc on my life: I was losing out on sleep, meals and experiencing joy. Social media seemed to suddenly start highlighting videos of young people dying from brain tumors. I stopped going outside, I found it hard to be present when playing with my son, and it was difficult to concentrate at work. I do not identify as a superstitious person, but I sincerely felt like the universe was trying to send a message that I had better be more vigilant, see a neurologist ASAP, and demand every bit of imaging and testing there is to rule out a brain tumor.

This vicious cycle continued: Googling, waiting for doctor’s appointments, seeking reassurance from friends and providers, and when my body finally seemed to go silent I would start to experience a new symptom that, in my mind, must be pathological. Within three months’ time I had diagnosed myself with lymphoma, a brain tumor, multiple sclerosis, malignant melanoma, esophageal cancer, colon cancer, pyelonephritis, and yet … none of this came true. I continued to have multiple panic attacks a day and eventually started to fear coming to work because I was constantly inundated with stories of death, illness and suffering.

Once again, I ended up in my PCP’s office with a racing heart rate. My provider asked for an electrocardiogram (ECG). When I saw the ECG machine roll out, I was filled with panic, because today will be the day I get diagnosed with supraventricular tachycardia or some other cardiac abnormality, and I’m going to end up with cardiac arrest and on ECMO. This was a pattern, and although I was in the middle of a breakdown, I was lucid enough to realize it. After ruling out an imminent cardiac event, my PCP kindly recommended that I see a psychiatrist. I realized what was happening: Consistent exposure to rare diseases (especially in younger patients) was fueling my (yet undiagnosed) health anxiety OCD and panic disorder. Here's the truth: I very much want to be around and live a long life, but my brain was not letting me find a place of peace. Have you ever found a path in the woods that was perfectly worn down by a busy animal scurrying through, and you find yourself walking on that same trail because it's, well, easier? That’s what it’s like in a circle of obsessive worry for someone with health anxiety OCD. If any of what I have described sounds familiar to you, there is hope. Seeing a psychiatrist was tremendously helpful. We worked to unpack many layers of personal and professional trauma that contributed to health anxiety OCD and post-traumatic stress disorder (PTSD). Diagnosis was the first step on a long road to recovery, and although it is something I still have, I want to share what I have learned to increase recognition, awareness and appropriate treatment in my fellow ICU nurses and caregivers.

Health Anxiety Obsessive-Compulsive Disorder

Health anxiety is a specific subtype of OCD. Health anxiety OCD is called many things: health anxiety, obsessive-compulsive disorder, illness anxiety disorder, hypochondriasis and somatic symptom disorder. All of them refer to a condition in which a person is chronically anxious about their health and believes that you must perform compulsions to prove a fear untrue. Health anxiety usually manifests itself because of dysfunctional core beliefs about health and illness.

Core beliefs in a person with health anxiety OCD may include the following:

• Intense suffering is inevitable if illness is identified.
• There is very little time between diagnosis and death.
• There is no continuum of health. A person can be only 100% healthy or have a 100% chance of imminent death.
• Rare diseases are more common than statistically presented.
• Any bodily noise must be tied to a diagnosis.

Health anxiety OCD is also married to fear consequences, including fear of dying or having an illness, fear of permanent suffering, fear of diagnoses because one was not vigilant enough in constantly assessing for an illness, fear of never receiving an accurate diagnosis, and never finding a treatment for the (real or imagined) illness. In other words, health anxiety is a unique form of torture that we don’t talk about enough. An ICU nurse with OCD may have intrusive, obsessive thoughts about health because of routine exposure to rare illnesses, death and suffering in the work environment.

Examples of Compulsions in Those With Health Anxiety OCD

• Spending hours searching the internet about diseases and associated symptoms
• Asking family and friends to perform physical examinations for signs of illness
• Repeated visits to the emergency department
• Visiting multiple physicians
• Excessively checking oneself for symptoms or changes in symptoms
• Avoiding places where one might be exposed to germs (i.e., in public)
• Avoiding images and entertainment where one might be exposed to death, dying or illness (e.g., character in a movie diagnosed with cancer)
• Avoiding objects and foods that might cause illness (e.g., foods with dye, certain chemicals, medications)

Magical Thinking

Individuals with health anxiety OCD might also experience magical thinking, which is the obsessive belief that thoughts, words and actions can manifest consequences in reality. A person with magical thinking may feel that seeing a story about a person with a rare illness, or a movie about an individual who has a tragic medical event, is an omen from the universe warning a person to stay vigilant by starting to assess for any symptoms that could indicate the evolving diagnosis of a medical condition.

Grappling With Reality

The reality is that any of us could be diagnosed with a medical condition or die at any time, but the majority of folks tend to go on with their daily lives without letting these thoughts consume them. There should be an awareness of mortality and death, but not cause people to have difficulty functioning or to spend hours obsessively researching various platforms for information on medical conditions.

Here’s the problem with Google: If you search, you shall find. When searching for diseases on the internet, there is no emphasis on the number of people with medical conditions who have gone on to live normal lives. Instead, you will find exceedingly rare, awful and scary stories that highlight untimely deaths. This result leads the reader with health anxiety OCD to believe, sincerely, that death and illness are right around the corner for them and/or someone they love. There is also no timer on Google to say, “Stop, you have been Google searching brain tumors for two hours, and the only symptom you have is a headache. That’s enough.”

Post-traumatic Stress Disorder

The art of working in the ICU leads to inherent risk for PTSD as described in “Diagnostic and Statistical Manual of Mental Disorders,” including constantly confronting death, the threat of death and serious illness. PTSD is common in ICU nurses, because they are exposed to mental trauma, heavy workloads and traumatic events; as many as 29% of nurses are estimated to have PTSD, whether clinically diagnosed or not. The ICU work environment exposes nurses to patients with an estimated average mortality rate between 20% and 25%. Individuals who battle PTSD experience three types of symptoms experienced more than one month after exposure to a traumatic event:

• Intrusive symptoms: Nightmares, repetitive memories, hallucinations, heightened sense of alertness about traumatic event
• Avoidance symptoms: Avoiding thinking about or encountering traumatic scenarios
• Neurovegetative symptoms: Sleep disorders, hypervigilance, irritability

Nurses in the ICU may be more susceptible to PTSD if they have worked less than three years or between three and five years in the ICU. Nurses with less than three years of experience in the ICU may have less experience coping with stress, and nurses with three to five years of experience are often the “backbone of the ICU” and are charged with more tasks, responsibilities (i.e., charge nurses), burnout and stress. Nurses may not realize their symptoms are actually signs of PTSD. Many ICU workers are hardy, stoic and tend to embody an attitude of duty and acceptance: It is my duty to support patients at the end of life, and it is normal for me to encounter death and dying daily. Therefore, ICU nurses may not complain about their experiences or feel compelled to ask for help. Unlike people with health anxiety OCD, those with PTSD may attempt to avoid triggering situations.

Considerations for Nurses Caring for Patients With Mechanical Circulatory Support

Caring for a patient with the added variable of MCS means that nurses will be confronted with traumatic events such as catastrophic ECMO decannulation and other ECMO emergencies, massive transfusion, delayed death while on ECMO support, and the omnipresent fact that in end-of-life care, someone will need to turn off the ECMO circuit before the patient dies.

Caring for patients with MCS is different; it’s critical care nursing but sometimes bloodier and with a higher mortality rate. The patient population represents the sickest of the sick. To me, it feels like this population comprises 100% of the world when the level of care and associated illness represents less than 1% of the world and the way people die. Working at a quaternary care facility can be especially distressing because these centers tend to boast a higher level of care and accept complex patients who are at a much higher risk of death. It is easy to forget that the large majority of patients presenting to a facility are discharged home with minimal or only self-limiting complications after admission.

Currently, there is literature that describes how and why patients and family members of patients who have received MCS therapies, especially ECMO, are at a high risk of developing PTSD and post-intensive care syndrome; however, there isn’t much literature to describe PTSD and health anxiety OCD in nurses who care for this specific patient population. Yet, when I talk to nurse colleagues I hear excessive worry about developing debilitating yet exceptionally rare illnesses, anxiety about patient care and situations that prevent restful sleep, making current health problems seem like catastrophes, and flashbacks about traumatic situations, patient suffering and death. Generally, nurses accept these feelings as normal.

While some of the nurses I’ve contacted might consider finding another job, leaving the ICU environment to avoid triggering situations may not be the answer if the lived experiences continue to haunt them. A variety of factors may prevent a nurse from leaving the ICU work environment, including pay differentials, schedule considerations, seniority and camaraderie. To address the mental health crisis for many nurses in the ICU, a conscious effort must be made to increase awareness of both health anxiety OCD and PTSD, and increase accessibility to supportive resources.

What are the next steps when PTSD and/or health anxiety OCD make an appearance? First would be the recognition that something is affecting your quality of life. The next step is seeking help. Communicating with your PCP is a great start, as they can guide you to the appropriate consulting service for the next steps, depending on your diagnosis and severity of symptoms. Treatment may include the following:

Cognitive Behavioral Therapy

• Therapists may encourage patients to reevaluate their thinking patterns and acknowledge overgeneralization of bad outcomes.
• Distorted thoughts contribute to distress, so a therapist will work with a patient to address catastrophic thinking.
• Patients might work on reconceptualizing their understanding of traumatic experiences to facilitate their ability to understand themselves and their ability to cope.
• Cognitive behavioral therapy (CBT) is conducted in a controlled, safe setting.
• The goal of CBT is to restore a sense of control, self-confidence and predictability for the patient and to reduce escape, avoidance and/or compulsive behaviors or obsessive loop thoughts.

Alternative Therapies or Multimodal Options

• Nature immersion: This therapy promotes nature connectedness, improving mood and psychological well-being.
• Medication: Medication is a tool that can be administered safely in collaboration with a provider. While a lot of work has been done on mental health and associated stigmas, there is more to do. If non-medicinal mental health treatments are not helping, reach out to a provider for medications that can help treat the symptoms of PTSD and OCD.
• Mindfulness: Meditating regularly, even for 10 minutes a day, can help improve mindfulness and reduce the fight-or-flight response for individuals with PTSD or OCD.
• Companionship: Try to schedule time to connect with others to give you something to look forward to throughout the week. Whether it is a good week or not, having a lunch, coffee date or phone call scheduled with someone meaningful can help foster a sense of connectedness on difficult mental health days.

Conclusion

My story hasn’t ended; some days are better than others. I have been fortunate to have an army of family and friends who have carried me through some of the darkest times of my life. I have found a supportive team of healthcare providers that I see frequently, and it enables me to discuss how I am feeling, honestly and openly, so my treatment plan can be adjusted as needed. My colleagues are deeply caring, and on days when I struggle there is nothing more cathartic than describing how I am really feeling to people who will listen. Sometimes being asked, “How are you?” prompts a check-in with myself, and I greatly value the people in my life who check in regularly. When someone I know and trust asks me how I am doing, I answer honestly – it keeps me real, authentic and transparent. In this way, I can help reduce the stigma related to mental health issues that are likely more common in healthcare than we realize.

I have also found tremendous consolation with the Calm app. When intrusive thoughts start to creep up on me, I will take a pause and complete a 10-minute Daily Calm meditation. It isn’t always possible to do this in the hustle and bustle of daily life and work, but I do it when I can. If it isn’t possible to step away, I will pause, take a moment to reframe my thoughts, inhale deeply and focus on the present.

Health anxiety OCD and PTSD will always be something that I struggle with, but I am pledging to do one thing differently: Choose joy. Choosing joy isn’t always easy, and some days it takes every ounce of energy I have to not follow my thoughts down the path of doom or sit in silence and sadness after being triggered by a patient’s death. It is impossible to not let the events of the day affect you sometimes; it’s human. However, one should not be consumed by obsessive thoughts, vivid nightmares and other symptoms that diminish quality of life. Life is a gift, and every minute we are awake is something to cherish. I will continue to choose joy and find meaning in every day.

I encourage you to take an honest look at your mental health and evaluate if you have been impacted by traumatic encounters, whether personal or professional. My wish for you is that you dare to take action and reclaim the parts of your life that bring you happiness so that you can feel them with every ounce of your being.

If you know someone who’s in distress, refer them to the 988 Suicide & Crisis Lifeline, which provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals in the United States.

I invite you to reflect on a quote from my favorite trilogy, “The Lord of the Rings.” Author J.R.R. Tolkien served in World War I, and much of his written work reflects on the experiences of his tour as he tries to make sense of them in a way that is meaningful, beautiful and relatable. In this novel, protagonist Frodo is challenged with destroying the One Ring and encounters death, greed, trauma and ultimately the destruction of innocence on his journey, as the world around him prepares for war. Frodo seeks consolation from Gandalf, his friend and companion, who offers words of wisdom I think about daily.

“I wish it need not have happened in my time,” said Frodo. “So do I," said Gandalf, “and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.” ― J.R.R. Tolkien, ”The Fellowship of the Ring”

My question is: What are you going to do with the time you have been given?