A mental health diagnosis can impact a person’s sense of self and their assumptions about what they can and cannot do. Sometimes this dynamic can be so self-limiting that it keeps a person from living their life to its fullest. In other words, there are dangers to letting a diagnosis define us, as writer Jordan Kisner recently noted in the article, “Diagnosis Trap,” in the October 2022 issue of The Atlantic.
At the same time, getting a correct diagnosis can also be empowering. Many people experience a sense of relief and even hope from being able to assign a medical label to whatever is going on, whether panic attacks, disabling mood swings, suicidal thoughts, or other worrying symptoms. A diagnosis can help them better understand and treat these issues.
What is the difference, then, between taking a diagnosis seriously and letting it negatively define you? And what specifically are the negative consequences of relying too heavily on a diagnosis to make life decisions? For help with these questions and others, we turned to FHE Health Chief Clinical Officer Dr. Beau A. Nelson, DBH, LCSW. He has decades of experience helping individuals manage their mental health symptoms while optimizing their quality of life. In the below Q&A, you’ll hear from Dr. Nelson in his own words about the “diagnosis trap”— and why getting a diagnosis remains crucial for anyone struggling with mental health symptoms.
Why You Are Not Your Diagnosis and Your Illness Doesn’t Define You
Q: Are there risks in letting a diagnosis define you, and if so, what are they? Why should someone’s illness not define them?
A: A medical diagnosis means that your symptoms align with a previously identified condition, but it is not individualized to a particular person. There are wide variations in how a disease may present or progress in different individuals.
Getting a diagnosis when we are scared and experiencing illness can sometimes be a welcome relief. Many people report feeling comforted when they know what they have. However, medical science is not perfect. Because the disease may present very differently in different people, we should not draw conclusions simply based on the information that is available (and not necessarily specific to our own body).
Most people when they read about different diagnoses see the worst parts, and these can instill fears and hopelessness that may not be in their best interest. Different bodies respond differently to different illnesses and to different treatments, so it is wise to take a diagnosis or a prognosis with a grain of salt.
Why People Let Mental Illness Define Them—and Why Not to
Q: What are some ways that people let mental illness define them, and why?
A: There may be many reasons why we focus solely on a diagnosis to define who we are. It’s not unnatural to focus on something that you want to improve, a goal that you wish to achieve, or a problem you’d like to resolve.
Some people may find that the attention and support that they get from defining or being primarily their diagnosis or illness is comforting. Some may struggle to get past the fear, unknowns, and possible negatives of an illness as it progresses, and we simply become consumed by all of that.
Distilling our whole person into one characteristic, trait, or problem, is not respecting the wide variety of all the parts of who we are. I like to think about it in the context of interpersonal relationships. For instance, the person you hate the most goes home to someone who is excited to see them. You might only be able to view that person as a jerk, but someone else does not see them that way.
It’s much easier to define someone over-simplistically than it is to see them as a complex individual full of many different pieces. Unfortunately, we can make the same mistake with ourselves.
People respond to illnesses in different ways. For some it becomes a reason for living, learning how to manage and deal with life in a spirit of hopefulness. For others it may spell the end. It may become a downward spiral that they can’t find release from. Here is what we know through research, though: How someone copes with an illness, their feelings and emotions related to the disease, and the practical steps they take in the process of dealing with it, can make day-to-day life better, regardless of the diagnosis.
When My Diagnosis Is Serious, How Not to Let It Define Me
Q: If a condition is serious and plays a prominent role in your life, does that mean it must define you? Is there anything one can do to prevent that?
A: Years ago, when I was working in a hospital, the administration made a push to not identify patients simply by their diagnosis. Rather than “breast cancer in Room 203,” we would say “Mrs. Smith who has breast cancer.” That’s because looking at someone as only a diagnosis dehumanizes the person and puts the focus on the imperfection rather than the whole person.
A diagnosis does not have to define you. It may be one part of many different pieces that make up who you are. Excessive focus only on illness, aches and pains, and discomfort, can rob us of quality of life even when an illness plays a big role in our life. How funny that as we get older, we talk about all our ailments and problems—something young people don’t do—but after a while this can really affect the way that we feel, how we approach life, and our daily focus.
It is generally better to be aware of, manage as best as we can, and adjust as necessary to any diagnosis or illness that we have. But it does not have to be the sole focus of our life. Make it a point to not talk about your illness in every conversation. Others may ask how you are doing but they really don’t have an ability to affect a change in your illness—so keep the conversations brief. It’s nice to have times when you don’t think about your illness and you’re able to focus on something else. As you are able, give yourself a break from your illness: Take time for things that you enjoy, people you care about, and reflection; be the person you can be in that moment, grateful for whatever can be.
If I Don’t Want to Know My Diagnosis, What to Consider
Q: From your perspective as a clinician, can you speak to how diagnoses help treatment by labelling what’s going on and classifying disorders? What would you say to someone who doesn’t want to put a label on their condition?
A: A diagnosis can be beneficial in highlighting what is going on for an individual. Identifying something that we have seen and that has been treated in various ways can give a road map for how to deal with it. Much like the old saying, “Don’t recreate the wheel if you don’t need to,” a diagnosis can help with the process of healing, treatment, or next steps in dealing with the problem. If something is completely unknown, then we may be less effective in trying to deal with it.
There may be many reasons why we might shy away from getting a diagnosis—perhaps fear, the prognosis, or any number of reasons associated with negative outcomes or problems. In this way, the diagnosis is not the issue but rather how we deal with that. The idea of not defining ourselves or our future by that diagnosis can obviously make a difference. Being informed, knowing the prudent steps to take in dealing with the problem, and making choices consistent with your quality of life can all come together to make your experience.
In more than 25 years of clinical work, I have seen so many people who have amazed me in how they faced an illness or even a terminal diagnosis. By embodying how the human spirit can overcome almost anything, they inspired me in my work with other patients and at a personal level. Such stories exemplify what it means to live with a serious diagnosis and not let it define you.