Feature illustration by Emma Novak.
Content warning: This piece discusses mental illness.
I have cancer.
No one seems to believe me when I tell them. My friends and family keep saying I’m worrying for no reason.
Over the past four years, I have convinced myself that I have lymphoma, leukemia, HIV/AIDS, nasal cancer, and lung cancer, to name a few.
It started in 2016 when I was lying on the couch sending ridiculous photos of myself to a friend on Snapchat until I noticed lumps on both sides of my neck.
It’s nothing. It’s just the lighting.
But what if it’s something?
I went to the bathroom to look in the mirror, and sure enough, there were two lumps on both sides of my neck. They weren’t hard, but they felt like lumps the size of an avocado pit underneath my skin. I spent the next hour poking and prodding at them until my skin turned red and felt tender to the touch.
How long have they been there? Is this cancer?
I turned to Google for reassurance. Instead, I encounter a list of deadly illnesses: lymphoma, leukemia, AIDS, and more. The list goes on and on.
I remember my eyes widening and my hands beginning to tremble while I stared at the list on my phone. I didn’t know how to react.
Cancer? How could I have cancer?
I don’t feel like I have cancer. I’m healthy, and I don’t have a family history of cancer.
I can’t think like this.
I leave the bathroom and put my phone away.
I need to go to bed. I’m not thinking clearly.
I didn’t sleep that night.
The next day, after spending the entire morning worrying about a potential cancer diagnosis, I built up the courage to book a doctor’s appointment at the walk-in clinic down the street from my house.
“What’s the reason for your visit?” said the receptionist over the phone.
I hesitated before giving my answer. What even was my reason? Do I tell her if I have an irrational fear that I’m dying from cancer?
My body was vibrating more than the phone ever could. In that moment, all I could say was, “lymph nodes.”
Walking into the clinic, I felt like my heart was going to burst from the stress. I told myself to expect the worst: whoever saw me would think that I have cancer and immediately send me for a CT scan to see how far the cancer has progressed.
Instead, a kind nurse practitioner, Parusia Purohit, welcomed me with a warm smile as she held the door open. Her presence was like a band-aid to my anxiety.
She asked what brought me in today. I told her I had lumps on my neck that weren’t there before.
She examined my neck with her fingers to feel for lumps.
In her expert opinion, she couldn’t feel anything.
She must be lying about not being able to feel anything.
I had stage four cancer; I just knew it.
I left that appointment more frustrated than I walked in. Despite her comforting words, I didn’t feel reassured, and she didn’t even offer me a blood test.
When I went home, the ‘what if’ thoughts immediately returned. What if she missed something? What if she wasn’t feeling in the right place? What if she isn’t even qualified to diagnose me properly?
I returned to Google. I decided I was going to find the answers I wanted by myself.
Little did I know, the number one thing you shouldn’t do when worried about your health is Google it.
It never ends well.
I looked up pictures of swollen lymph nodes to compare them to mine. I scanned through hundreds of images for maybe an hour, yet none of them seemed remotely similar to mine.
Maybe these people have advanced versions of lymphoma.
Next, my extensive research took me to the causes of swollen lymph nodes – things as simple as the common cold all the way to leukemia.
I felt like I was being swallowed whole in a pit of anxiety.
I sent my friends pictures of my neck to get their opinion.
“ur just being crazy lol,” one of them texted.
I’m the one who’s being crazy?
“I don’t see anything,” another texted.
The more I looked into what causes swollen lymph nodes, the more anxious I got. My heart began to race again, my breath went shallow, and my world felt numb.
I didn’t want cancer. I didn’t want to die.
At the time, I knew what hypochondria was, but it never crossed my mind that I had it.
Hypochondria, which is commonly referred to by some as health anxiety, is an anxiety disorder that sits within the obsessive-compulsive disorder (OCD) spectrum. It causes obsession over the idea of having a serious but undiagnosed medical condition.
In 2016, The BMJ called it a “silent, disabling epidemic.”
It affects roughly two to five per cent of the population and typically develops during adulthood.
The main symptoms include long-term and intense fear of having a serious condition, worrying that minor symptoms might mean something serious, and frequently visiting or switching doctors.
Hypochondria can even manifest into physical symptoms, such as dizziness, rapid heartbeat, tingling in the hands and feet, chest pressure, and more. These symptoms alone make your experience worse, further tricking you into believing a deadly illness causes them.
Those without the illness may not realize how crippling hypochondria can be. It’s not a way to seek attention, and it’s more than just a worry.
Let’s say you wake up with some joint pain or a headache—most people tend to ignore those after popping an Advil. However, for people with hypochondria, these minor maladies are exaggerated into major illnesses. A headache becomes a brain tumour. A cough must mean lung cancer. A little indigestion means heart disease. Tingling in the joints means a stroke.
That fear completely takes over and shuts everything else in your mind down. You become a hostage, and it’s difficult to break free from that cycle.
In an interview with The San Diego Union-Tribune, George Platt, a clinical psychologist and vice chairman of psychology at the Scripps Memorial Hospital in La Jolla, said, “Hypochondriacs become their symptoms. They have such an inappropriate preoccupation with the smallest physical problem that it gets in the way of normal living, and it becomes a self-fulfilling prophecy,”
After the first visit, I continued to visit the same nurse practitioner from the clinic once or twice a week for the next few months. I showed up to each new appointment even more hysterical than the last.
I would beg and plead for a CT scan, a PET scan, a fine-needle biopsy. While I was terrified of receiving a cancer diagnosis, I wanted answers.
My begging never worked. I’d always be met with a reason about why I didn’t need those scans.
“It’s just your anxiety.”
“The radiation in CT scans causes cancer.”
“A fine-needle biopsy can trigger cancer cells to grow.”
“You’re too young to have cancer.”
Those doctors, nurse practitioners, and nurses never gave me the scans I desperately desired. Instead, they would offer another ultrasound of my neck or blood test. Even after receiving multiple ultrasounds of my neck area and having proof on paper of no signs of cancer, I always fell back into the ‘what if’ habit.
What if ultrasounds aren’t an accurate test for lymphoma? What if the technician didn’t scan me properly? What if they mixed up my results with someone else?
I went to almost every walk-in clinic I could find in the city because, despite receiving opinions from multiple medical professionals, the opinions were never enough. Their words were never enough. The ultrasounds and blood tests were never enough. The thoughts always came back to torment me.
One day, when I called to book yet another appointment at the clinic down the street, I hadn’t prepared myself for what was about to happen.
“What’s the reason for your visit?” said the receptionist.
“Lymph nodes,” I said.
“Ok, listen,” the receptionist started, “you’ve booked countless appointments for your lymph nodes. If they’re bothering you this much, you should go see your family doctor or go to the emergency room.”
I’d never hung up the phone so fast in my entire life.
Did the nurse practitioner get annoyed with me? Was I wrong this whole time?
I felt so ashamed. I never went back to that clinic again.
I also told myself I’d never go to any doctor again. I couldn’t bear to be turned away by another ignorant receptionist who had no regard for my worries.
For months going forward, every minute of every day consisted of me thinking about when I would finally receive my cancer diagnosis and what the doctors who turned me away would finally think. Any spare moment I had was spent reading forums and articles about people my age dismissed by doctors, only to be diagnosed too late for treatment. I was the next victim.
Every morning and night, I spent 30 minutes examining my body from head to toe, feeling for any new pains, sensations, or tingles. Scanning for any new bruises, bumps, or dots. Listening to my heart and breath. I poked at my skin so often that I began developing bruises.
If the slightest thing seemed even remotely off, like a new mole or a new lymph node I was able to feel, I fell down the rabbit hole of research, anxiety, and tears. It was a never-ending cycle.
I refused to seek treatment for the next two years.
I didn’t want to hear the bad news. I didn’t want to be shunned by a receptionist or doctor again. If I had cancer, I decided I was going to let it take me.
I was done fighting.
More Than Meets the Eye
There’s no fix-all solution to hypochondria. It stays with you for your whole life, but when coupled with proper treatment and diagnosis, recovery is possible, meaning you can diminish those thoughts.
But when those thoughts do re-appear now and then, it can be a terrifying experience. A brief look at a hypochondria message board will show you just how terrifying it is.
Hypochondriacs are driven by the fear that every twitch or bump is a mortal threat. They can’t stop making doctor’s appointments, making phone calls to their friends, and demanding test upon test, drug upon drug until they get the reassurance they need.
In a research study done by Cynthia Kmety on hypochondria’s effects on interpersonal relationships, hypochondria was associated with anxious attachment, hostile and defensive interpersonal styles, interpersonal vulnerabilities, and strained relationships with physicians.
Hypochondria leads to “doctor shopping” when someone doesn’t receive the answers they came in for. When they visit a new doctor to be diagnosed and are brushed off, they go out of their way to get another opinion—and it strains their relationship with their primary care physician. It’s not easy to find a doctor who listens because they’re busy and see many patients regularly, which leads to many doctors avoiding their patients.
In an article from The New England Journal of Medicine, Arthur J. Barsky, M.D. suggests that successful long-term medical management requires a durable and trusting doctor-patient relationship. “Visits should therefore be scheduled on a regular, rather than an as-needed, basis …. A few patients may still make excessive requests for attention, in which case the physician must set limits in a non-punitive manner.”
When those limits aren’t set, those fears can add up – psychologically and financially. In the U.S., hypochondriacs contribute $20 billion a year to the healthcare system through unnecessary medical examinations.
“Tests and specialty consultations should not be performed solely for the purpose of reassurance … [this] must be coupled with the explicit assurance that the physician understands that such symptoms are real and not imaginary,” said Barsky.
Finding The Truth
In the Fall of 2018, on a routine walk to my dance studio, I pass by a new clinic with a familiar name. Purohit Nurse Practitioner Clinic. There were no cars, and the lights inside weren’t on.
I recognize that last name...
I continued to walk by it twice a week, wondering when it would open, until it hit me:
The nurse practitioner I went to see at the walk-in clinic was the one behind it all.
I booked my appointment as soon as they started accepting patients the following month.
Once inside the clinic, I couldn’t let go of this weird feeling. I felt as if I walked into a big, warm hug. I felt at home.
There were relaxing binaural beats playing in the lobby. The décor looked nothing like a typical doctor’s office. And instead of sitting on uncomfortable plastic chairs, there were affirming couches.
I couldn’t find words, like the doctors before couldn’t find out what was wrong with me. But I almost felt better by just being there.
Before I knew it, I was back to the same pattern as before: I’d visit the clinic often. However, this time, I was a regular patient and not a walk-in. We negotiated that I could email her whenever I wanted with any concerns, and she would respond promptly to put my mind at ease.
It wasn’t long before I began abusing the ability to email Parusia whenever I needed advice.
Instead of going to Google for advice, I would flood Parusia’s inbox with two to three lengthy emails a week, sometimes with pictures attached of a body part I was concerned about.
After having a bad panic attack one night and sending a five-paragraph-long email to Parusia, she called me in for an appointment.
“Your last email worried me,” she said.
She talked about noticing my overwhelmingly anxious behaviour over the past two years.
To me, I never saw anything wrong.
After we discussed my anxiety-filled history, Parusia diagnosed me with hypochondria, commonly referred to as health anxiety. Then it clicked.
I have hypochondria.
This is why I always felt like I was dying. Hypochondria is a never-ending cycle of being held hostage by my thoughts. I am like a prisoner. No matter what I do, where I run, or where I turn, they follow me everywhere I go. They offer no mercy.
They follow me to the grocery store.
To the bar with my friends.
To the shower.
To the spa.
And they stay with me at home.
I couldn’t relax or focus on anything because my mind was constantly racing.
I still have trouble looking at myself in the mirror because I know I’ll start poking at my neck.
An Expert’s Point of View
Parusia says hypochondria can arise after someone is incorrectly diagnosed or not taken seriously for their doubts in many cases.
“They don’t trust what they’re told because they’ve had that experience of it being wrong in the past,” said Purohit. “That leads them to start overthinking and self-diagnose.”
Hypochondria can also arise after someone experiences someone close to them going through a traumatic health diagnosis (e.g., cancer), especially at a very young age. It can manifest from there and continue into the process of endless doubt.
When comparing hypochondria to anxiety or depression, hypochondria tends to work hand-in-hand with the two.
“[Hypochondriacs] get anxious, right? Because they’re worried about their health,” said Purohit. “Then they are also depressed with the possibilities of what could be going on with their health.”
When it comes to a lack of resources and clinical studies on hypochondria, Parusia agrees we, as a society, need to make strides to make more people aware of it.
The more research we can put into hypochondria, the more people will believe it’s real instead of finding out for themselves, as I had to.
“I think a lot of times, unfortunately, people get kind of cast-off,” said Purohit. “A lot of healthcare professionals will also just stop seeing them or not address their questions or concerns.”
Treatment remains quite limited. The most common type is cognitive behavioural therapy (CBT), which helps patients recognize the beliefs (“fears”) that feed the problem (“hypochondria”) and then adopt more wholesome thought patterns and behaviours, by breaking down unrealistic thoughts and encouraging patients to replace them with more rational coping mechanisms. CBT needs to be done by a psychologist or psychiatrist with years of experience performing it. If they approach it incorrectly, they run the risk of making it worse.
Other forms of treatment are medication, yoga, meditation, and exercise. However, most people tend to forget one of the most significant ways to overcome hypochondria is a proper support system, whether it be your therapist, family, or close friend.
This issue many hypochondriacs face is not feeling heard by their friends, family, or coworkers. A person who has hypochondria — whether they are aware of it or not — will voice their concerns about something they feel is going wrong inside their body. Friends and family might simply tell them to “get over it” or that “they’re overreacting.”
Suppose you don’t have a good relationship with your family or don’t feel comfortable talking to your friends about it. In that case, it can be challenging to have a proper support system.
This was my reality until I discovered a hypochondria and health anxiety Facebook group with over 8,000 members. This group made me feel seen. I could relate to others instead of feeling so isolated.
This group also made me realize the stigma around hypochondria has remained taboo to the public eye.
According to Regina Williams, a 43-year-old woman who’s suffered from daily panic attacks for ten years, it’s been challenging to find support.
“Hypochondria isn’t a choice,” said Williams. “The way I see it, it’s an addiction to chaos.”
A way to help someone in your life voice their concerns about their hypochondria without having it strain your relationship is to have a cap on how often you let them address a specific concern.
“Susan, are you worried about anything with your health today?”, then talk about it with Susan for 10 minutes, then continue on. This helps Susan feel heard without disrupting the rest of the day together.
“It gives that person a chance to actually feel like they’ve been listened to,” said Purohit. “All that person needs is the chance of somebody hearing them.”
Moving on with a different activity after discussing a health worry gives that person peace of mind. Instead of them worrying about their thoughts creeping up behind them, they’ll finally be able to enjoy time with you because you gave them a chance they’ve been desperately looking for.
Today, I’m proud to say I’m doing pretty well (for the most part). It wasn’t easy to get to this point. There were lots of tears, frustration, doctor visits, and endless Google searching.
However, the hard truth of it all is that hypochondria is something I’ll have to deal with for the rest of my life. I’ll still have bad days and good days, but hopefully, more good days than bad.
Those bad days don’t need to be hard, though. I’ve started practicing yoga, meditation, and most importantly, taking Adderall (for ADHD) and Paxil (for anxiety and depression).
But with the bad also comes the good. Parusia says there can be a positive to having hypochondria.
Hypochondriacs can be powerful advocates for their health. We know our bodies better than anyone else.
“People with hypochondria can learn how to actually voice their concerns,” said Purohit. “Most people don’t know how to do that.”
Parusia also diagnosed me with attention deficit hyperactivity disorder (ADHD) because I voiced my concern about not being able to focus in class and enjoy a book because I would constantly get distracted.
Because of my hypochondria, my ADHD has improved drastically. I likely wouldn’t have been diagnosed for who knows how long if I wasn’t a huge advocate for my health.
“Nobody ever sees that as a positive, but there is a positive in there,” said Purohit. “Don’t forget that.”
If you think your friend may be suffering from hypochondria, be open-minded, willing to talk, and don’t shut them out. When we open the conversation, we shrink the stigma.