Surviving Lymphoma and Gaslighting

May 01, 2017

A teacher is walking down the hall, as she turns the corner, she sees a child shove another student into a locker. When she approaches the child, she asks, “Why did you do that?” The child replies, “Do what? I didn’t do anything.” The teacher then says, “But I saw you push that student.” The child replies, “No, that wasn’t me.”

If you are like me, you probably felt a little jolt of frustration tighten in your chest reading that response. How could there be such a discrepancy between realities? How could an experience of an event that is so obvious be denied with such certainty? Four years after my stem-cell treatment that put my lymphoma into remission, I had been experiencing debilitating sinus infections that were getting worse by the month. Perhaps more alarming was how fast my lymph nodes were proliferating, mimicking lymphoma. It was a puzzle to my doctor, who kept insisting my cancer was coming back and that I needed biopsies to prove a relapse. After all, my lymph nodes were behaving much like that in a cancer patient.

By: Steve Cheney, LPC-I
Supervised By: Dr. John L. Garcia, Ed.D, LPC-S

Every six months or so, I would have a PET scan, blood work, and the occasional biopsy. Each biopsy came back negative – no cancer. The riddle continued. The question I kept asking was, “if it’s not cancer, then what is happening?” I told my doctor about the sinus infections and feeling sick, but that seemed to be brushed off every time I brought it up. The one thing I couldn’t shake was the feeling that something wasn’t quite right. After several years of this, my mental and physical health was deteriorating.  As relieving as it was to see “no evidence of active disease,” I was worn out from the persistent worry and anxiety that was always with me. It was extremely unsettling.  The thought of the next appointment filled me with dread. An eerie rumor began to circulate in my mind: it’s cancer.

In November 2015, it happened again. My doctor reported that I needed another biopsy. At this point, I had enough. I told her I wanted to go back to my original doctor. She told me “well, they’re just going to say the same thing.” I was caught off-guard by a very rebellious, tired, and desperate voice within that said, want to make a bet?  I chose to tactfully reply to the doctor, “I’d like to take my chances, just to see.” This worried me. I wanted a different answer. But what if the doctor was right? I had to remind myself of the reality that I was tired of invasive biopsies that provided no answers. I needed to find different help. I walked out of that appointment knowing I would never set foot in that office again. Immediately afterwards, I went downstairs and tried to make an appointment with the first doctor I ever saw at the hospital – someone I trusted and who I thought could share a fresh perspective on my situation.  A consultation appointment was scheduled a month away, in January, 2016.

Shortly after this small victory, I fell ill several times. In one instance, I became so sick that I was taken to the emergency room with a fever exceeding 103 degrees. Thinking I had made a grave mistake in declining another biopsy, doubts about my self-advocacy started to rush in. After a few tests, the doctor came back to tell me they found nothing. The only thing I got from that visit was a substantial amount of IV fluid, a $4,000 hospital bill, and the need to urinate every 10 minutes. I was beginning to really doubt whether I should have switched doctors. I felt like I was going insane. I thought I was doing this for the best and instead things are getting worse.

Shortly after that ER visit, I realized I needed to take things into my own hands. My reality that consisted of constant suffering was not being given the attention it needed. The worrying was not helping, either. I had an upcoming appointment with a different doctor and I wanted to be prepared. I needed to take things into my own hands. I started by building an Excel spreadsheet and imported bloodwork data collected since my diagnosis in 2011. The doubt started to set in again. What am I going to find here? Did I actually think I would be the one to catch something that somehow evaded the doctors and nurses? Upon immediate completion of the spreadsheet, I noticed that one of my blood counts, something called Immunogammaglobulin or “IgG,” was registering extremely low. The normal range for this count was anywhere between 600 and 1200. Its value dropped slightly over the years and then plummeted – right around the exact time I had those emergency room visits. I thought to myself, if this had mattered, surely someone would have caught this, right?

When it came time for my new appointment, the doctor took one look at the count and said that it could possibly explain the lymph node proliferation and sinus infections. I was scheduled to have IgG replacement therapy to see if that would help. It only took one treatment before I started to feel the effects.  It was the healthiest I had felt since I could remember. In fact, it had been so long since I had felt this good that I completely forgot how it felt to be “normal.” The difference was astonishing. I’ve now been diagnosed with primary immunodeficiency, requiring IGG replacement every month and I have felt completely healthy ever since. At this point, you’re probably wondering how gaslighting relates to this story. I’ve noticed that popular sources tend to simplify the concept of gaslighting by breaking it down into categories of victim and perpetrator. By using these oversimplified terms, I am concerned that it may be missing a larger audience.

These oversimplifications also imply intentionality. Of course, there are times when individuals intentionally distort reality to cause harm. I also believe there are times when this is not the case. I don’t believe I was a victim and that my doctor was the perpetrator. I don’t believe that I was intentionally deceived. What I do believe is that since oncologists are hyper-focused on catching cancer, they may be vulnerable to letting something obvious slip under the radar. Unfortunately, this resulted in a preference for one reality over the other, which is gaslighting. Luckily, I was somehow able to come to terms with the situation and eventually change doctors. I wonder what happens to people who don’t have the luxury to leave an unhelpful situation like I did.

At what point does one person’s reality matter more than another’s? How desperate are we to preserve our own world view?  When do we stop asking what the other person sees? The one thing that comes to my mind when I ask these questions is the thought I wish someone had asked me how I was feeling. In other words, the communication cycle lacked any form of feedback.

In the instance of domestic emotional abuse, gaslighting is an essential component needed to persuade others that the reality of psychologically harming loved ones is normal. I can imagine those who are suffering from it secretly wishing for feedback. The only problem is that the desired feedback source is someone who cannot give it. So, where do they get feedback? It’s not something as simple as switching doctors to get more helpful feedback. They cannot just make appointments with different families, shopping around to see which one would be a good fit. How can these people get feedback that validates their circumstances rather than creating more distortion?

Going back to the categories of “perpetrator” and “victim” roles, we run the risk of excluding those who are not even aware they are being abused. Physical violence and sexual assault leave their marks, and it can be obvious who the perpetrator and victim are. However, someone experiencing emotional abuse (without physical or sexual abuse) is already in an extremely vague and complicated situation, which leaves them more vulnerable to gaslighting. They won’t see themselves as a victim because it is never that clear or obvious. That’s exactly the function of gaslighting. It creates so much doubt that you can never be sure what reality is correct, yours or theirs?

If this is the case, then maybe we need to be sensitive and listen to understand instead of listening to respond. When we only listen to respond, we run a great risk of assuming our reality is more important than another’s.


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