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Who Are You? Illness and Identity.

Do you ever triggered? I mean really pissed off by what someone else has said? So much so that you can’t think straight?

It happened to me the other day. I was having a conversation with a woman I was networking with, and when the topic of my book and chronic health issues came up, she said to me:

“When you are chronically ill, your illness becomes part of your identity.”

A simple statement, but not to my ears. Here’s how I interpreted the words she spoke:

  • I have an illness (I prefer to refer to it as a “health condition,” rather than disease or illness).

  • My illness should not be part of my identity.

  • It’s a bad thing that my illness is part of who I am.

  • I am failing by allowing my illness to be part of my identity.

  • I like being sick.

  • If I were doing the right things and trying hard enough it would not be part of my identity.

  • I need to change so I no longer identify with my illness.

When filtered through my experience of life, her words carried a lot of additional meaning. Painful meaning. Meaning that poked a sore spot in me, and brought out my inner dragon! Her words felt like an accusation and a judgment, and in my mind I immediately jumped on the defensive:

  • What are we meant to do?

  • Ignore that we have chronic pain and illness?

  • Deny our health conditions?

  • Meditate or think our way to health? (Believe me I’ve tried.)

  • My illness is not part of my identity!!

Or is it? I want to vehemently deny the accusation, but I don't feel like I have a clear perspective on the matter. What I do know is that I try hard to live as “normal” a life as possible, I try to speak about my health as little as possible, and some people in my life don’t even know I have a health condition.

After pondering my initial reaction, I shifted my view slightly to look at her statement from a different perspective.

First of all, what did she mean, specifically, when she said, “your illness starts to become part of your identity?” My identity from whose perspective? Hers? Mine? I don’t necessarily have any control over whether someone identifies me with a health condition once they learn more about me. Often, this “identity” is put there by them, not me, and then that person assumes that since they identify me with illness, I must identify myself with it too. But that’s not necessarily true.

On the other hand, how can we not place identities onto ourselves and other people? Our brain often makes these connections without much conscious thought. Problems start to arise when others perceive a certain identity to be either positive or negative. If we are associated with a “positive” identity (successful, healthy, wealthy) then great, but if we are associated with a “negative” identity (sick, disabled, unhealthy) then suddenly it’s bad and it's our fault.

In reality, when you pause to consider some of the people who have been labeled with so called “negative” identities, you will probably be able to come up with a list of people who have overcome disabilities to triumph, and used their disability to inspire others. In this way, they have made their disability a “positive” identity. Think: Rick Hansen, Paralympic athletes, Jennifer Brea, and many more.

So with this in mind, I say damn straight my chronic pain and illness are part of my identity! I am a survivor. I have fought hard to get where I am and I am proud of how far I’ve come and what I’ve overcome. Sure, it’s not what I had envisioned for myself, but here I am, and I am going to use what I have learned about illness to spread awareness, educate and support others. Why not use my condition as a gateway for contributing something meaningful to the world?

The next time someone suggests that my illness has become part of my identity, I am going to:

  1. Be curious.

  2. Not take it personally.

  3. Ask the person these questions:

  • What do you mean, specifically, when you say that my illness has become part of my identity?

  • It sounds like you see that as an undesirable thing. What do you see as a better option?

  • Have you had to deal with something similar yourself?

  • What would you do in my shoes?

There is much more to discuss about identity and illness, and I've simply scratched the surface with this post. If you have something to say on the topic, I would love to hear it!

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