Am I Overidentifying with My Chronic Illness?

A diagnosis can be validating and even empowering. But when it consumes your identity, it can have detrimental impacts.

A diagnosis can act as a roadmap, validating your experience and providing a path forward through treatments and prognosis. But what happens when you allow a diagnosis to become a key component of your identity?

Here’s how I’m working to stop overidentifying with my rheumatoid arthritis (RA) diagnosis.

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Considering whether I’m overidentifying with my diagnosis

My introduction to the concept of overidentification (or engulfment) with a diagnosis came through the book, “A New Earth” by Eckhart Tolle.

Tolle writes, “An illness can either strengthen or weaken the ego. The ego becomes stronger if you make the illness part of your conceptual identity.” Tolle defines the ego as a false sense of identity, like a voice inside your head that pretends to be you and tries to control your thinking and behavior.

So, if your ego tells you that you are your diagnosis, it may be maladaptive. It can give your illness a lot of power and control over your feelings and emotions.

Something about this concept stuck with me.

There was a time before my diagnosis when I was experiencing many perplexing symptoms, and I felt fearful and discouraged. Getting a diagnosis felt like a lifeline. Now this thing that seemed like it had taken over my body had a name.

Once I had a diagnosis, I was able to get help from doctors and join support groups where I was connected to others who could relate to my experience in a way that my family members and friends could never fully understand.

Then, I started writing about RA and advocating for those living with chronic illness.

Now that my work is tied to my chronic illness, I find that I expend a lot of mental energy thinking about RA and how it affects my life. It can feel like my identity is tied up in my diagnosis, and I often wonder whether I’m allowing it to control my life more than I should.

The possible harm in overidentifying with a diagnosis

Considering the ways in which I may be overidentifying with my chronic illness pushed me to notice the possible harm that this may cause — or at least the ways in which it does not always serve me.

Failing the textbook expectations

A diagnosis can be a helpful tool for a patient and doctor but it’s important to remember that every individual is unique, so their journey with a disease will be too.

For example, although the doctor who diagnosed me told me I had a “classic” case of RA, my treatment journey has been anything but predictable.

I may have many classic symptoms of RA, but I have not been able to tolerate any medications commonly prescribed to treat the disease.

Just because a person has a diagnosis does not mean they will present with the symptoms in a “textbook way,” or that the treatments will work for them, or even that an outlook will play out as expected.

This can be hard. When you overidentify with your chronic illness, it can make you start to question yourself.

Why can’t I tolerate these medications? Why am I different? But it’s not me, it’s my chronic illness.

It can make you feel worse when you don’t seem to abide by the typical expectations.

Information is powerful, but it’s important to remember that what could happen doesn’t always equate to what will happen.

Missing out on opportunities through fear

Another risk of overidentifying with a diagnosis is that it can cause you to miss out on opportunities or experiences over fear of what could happen now or in the future with your disease.

So far, my RA has been progressing slowly. Many of my initial fears of having joint replacements or serious mobility changes have yet to become a reality. But these fears have previously stopped me from pursuing certain experiences.

One way that I have decided to take back my life and let go of the fear around my diagnosis is by traveling more, even though there’s no way to predict how I will feel on any given day.

To feel more in control when I’m traveling, I make sure to plan well and bring along any and all tools that could help me deal with symptoms that may arise.

I have adopted a “try and see” approach to opportunities and experiences. I will try and see if I am physically able to do them, rather than assume that it’s not possible. I live for me, and not through my diagnosis.

The struggle to not overidentify with my diagnosis on a high pain day

On the days when I feel relatively good, I have the liberty of not having to focus on RA and can even forget it’s a part of my life. This makes it almost feel easy to not overidentify with my diagnosis.

On high pain days, however, my symptoms can feel like they drown out everything else about me.

One trick I’ve learned is to remind myself that just because I feel a certain way right now, doesn’t mean that I will feel that way forever.

On high pain days, I work hard to accept that I will not be able to accomplish all that I would like to and try to remind myself of the simple pleasures in life that bring me joy and make me feel like me.

I am so much more than my chronic illness

RA affects my daily life, but it doesn’t have to define me.

I probably spend more time and energy thinking about my chronic illness than I would like, but I know that it’s far from one of the most interesting things about me.

Having a chronic illness can even have positive impacts on how we see ourselves. Tolle mentions in “A New Earth” how illness can weaken the ego and can cause people to gain insight and become more gentle and kind.

In my experience, having a chronic illness — and more specifically, dealing with chronic pain — is humbling and has made me more empathetic to people’s struggles around me, even when they’re very different from my own.

I am so much more than my chronic illness. And in some ways, I am more than my chronic illness because it has made me more.

The bottom line

I have RA, but it’s not an integral part of who I am.

Having chronic pain has been an enormous struggle in my life, and it has also shaped me by making me more empathetic to others, softening me, and also causing me to find an inner and outer strength that I didn’t know I was capable of.

As I work to decouple my diagnosis from my identity, I can also acknowledge the ways that my chronic illness has given me more insight and empathy for others.