Have you ever looked in the mirror and realized you didn’t recognize the person looking back at you? This can happen after big transitions, significant periods of stress or growth, or if a lot of time passes without reflecting on who we are. Much of our identity can be discovered when we look in the mirror, both literally and figuratively. When we think about identity, we’re really seeking to answer one simple question: Who am I?
Each person’s identity is formed through a combination of factors that include our experiences, perceptions, qualities, values, choices, and places of belonging. As more and more people get sick in our world, we must hold in mind that chronic illness impacts your identity. Being diagnosed with a chronic illness, like Chronic Inflammatory Response Syndrome (CIRS) in my case, can leave you feeling alone, confused, overwhelmed, and lost. It can feel like you don’t know who you are beyond the illness anymore, shifting where you feel like you belong in life and how you move through the world.
While we don’t get to choose many of the factors that make up our identity, just like we don’t intentionally choose to be diagnosed with chronic illness, we do get to choose how we respond to what life offers us. In this post, we’ll explore some of the places where it can feel like your identity slips out from underneath you, and some meaningful things we can do to find ourselves among the wreckage of chronic illness.
The Labels
Chronic illness impacts your identity by giving you new labels for what’s “wrong with you.” The labels of diagnoses can weigh heavily on us. When I was initially diagnosed with CIRS, I was relieved because it meant someone knew what was going on for me- that my body’s response made sense- and that there was a way to treat it. Since being diagnosed, I have sat with many other emotions beyond relief, and at times teetered on letting the diagnosis define me since CIRS will be my lifelong companion. CIRS impacts what I eat and drink, the air I breathe, the places I go, the items I keep in my home, how I feel, how I sleep, my cognitive and emotional capacities, and my energy levels. Not being able to walk into any building or home without worrying about mold has made being out in the world a worrisome affair after spending three decades prior to being diagnosed entering spaces in a carefree manner.
In the mental health world, there are many articles and blog posts focused on not letting a diagnosis define you. In my experience, that can be easier said than done because of how deeply chronic illness impacts your identity. It can behoove us to remember that we are multi-dimensional, however. Having a chronic illness diagnosis will label a set of our experiences and potentially define a part of who we are, but it doesn’t have to permeate so much of our identity that we lose sight of ourselves beyond the label.
Certainly, threads of chronic illness can show up in places and ways where it might not be welcome. One of the things I have frequently and consistently struggled with is how far-reaching the threads of CIRS are. Chronic illness impacts your identity- personally, socially, professionally. It would be more than enough to manage CIRS in just my personal life, but to have it impact my energy levels and word-finding at work, knowing that I choose not to disclose the reason behind these changes, that’s been overwhelming at times. Work is the one aspect of my life where I strive to maintain a distinct separateness from CIRS as much as possible; it’s the one place I get to show up feeling hopeful, helpful, confident, and competent. Many days, that’s my saving grace because I get to feel like me again for a few hours.
CIRS is a part of me, but only one of many parts. I was the same person before the diagnosis- I had the same heart, the same dreams, the same soul. My core is unaltered by CIRS. While it may influence how I move through the world, it doesn’t rewrite the script for who I am on the inside. Even if we just stick to the labels, you are still more than your diagnosis. You are a son or daughter, perhaps a mother or father, a friend, a cousin, a sibling, an aunt or uncle, a woman or man, perhaps you have a professional title or identify with your hobbies, you likely identify with a culture, and above all, you are human. You are always more than the labels given to you to describe your experience, and you are certainly more than just a diagnosis. Chronic illness impacts your identity, and you are so much more than one label about illness.
The Can’ts
I prefer to take in a realistic perspective of life, acknowledging all the comfortable and uncomfortable moments life has to offer, but it can be challenging to not be consumed by the many changes that inherently come with chronic illness. And it’s hard not to slip into the can’ts: It’s not just that I shouldn’t go in moldy spaces- it’s that I can’t. I can’t work in an office with elevated levels of mold, I can’t visit family or friends in homes with unaddressed water damage, and I can’t go into public schools. I can’t tolerate gluten or dairy, I can’t eat carbs without gaining weight, I can’t wear perfume. I can’t have children right now. That’s a lot, and understandably, some people inevitably find themselves leaning on the can’ts like a crutch because the weight is too much to bear. Other people set out to change those things they can’t accept. And some people just ignore it and do what they want for as long as they can.
Ultimately, I actually can choose to do most of the can’ts listed above, if I’m willing to live with the consequences. When I zoom out and look at the big picture, I choose not to go into moldy buildings, eat gluten or dairy, wear perfume, or have children right now because that’s how I can best care for myself so that maybe some of these things might be an option in the future.
Because there are so many ways and places where I cannot control how CIRS impacts me, it’s important to me to manage what I can where I can. That feels more empowering than acknowledging only the places where I don’t have control. A significant part of what we can control is our mindset. I get to choose what I eat and if I eat foods that help me feel my best- that was true before CIRS was on the table. I get to choose what I do for leisure and pleasure, how much I exercise, what I do for work, where I live, who I spend my time with, how I spent my time, how I spend money, and what time I head to bed. CIRS may influence some of those things, but ultimately, it’s my choice to make decisions that take best care of myself. We all have choices and it’s empowering when we can see them as choices instead of focusing on restrictions.
Knowing that chronic illness impacts your identity, what “I can’ts” do you tell yourself? Let’s reframe them to “I choose to…” to help you feel empowered and give you some semblance of control over something that feels so inherently out of control.
The Vulnerability
As a society, we often see illness as weakness, but we also tend to see vulnerability as weakness. In reality, vulnerability is a strength and it brings us together. Think about the #metoo movement– that’s all about vulnerability. Research shows us that vulnerability is essential in close and connected relationships. Vulnerability is about being open; it’s about taking off the armor and showing up wholeheartedly. To learn more about vulnerability, watch Brene Brown’s TED Talk below. It’s well worth the 20 minute listen.
Having a chronic illness is an invitation to be vulnerable- to show up and be seen just as you are. It’s an invitation for rest and recovery, to deepen relationships by sharing your experiences, and to accept care from others without having to feel inferior. I have chosen to educate the people in my life about what’s going on for my body and my heart and how they can support me. In my experience, it’s never fun, and it’s never easy, but it has made all the difference.
Just like vulnerability, illness can bestow gifts upon us: the gift of slowing down, the gift of living meaningfully, the gift of connection, the gift of recovery, the gift of resilience, the gift of a wake up call, the gift of finding your voice or your village, the gift of learning to care for your body and soul. When we can learn to tolerate the discomfort, vulnerability and weakness have so much to offer beyond the initial shock of pain, suffering, heartache, loss, and humiliation or shame.
The Mourning and Grieving
We often talk about grief in terms of losing people and animals we love deeply. I think it’s important to expand that conversation to make space for mourning the loss of identity for ourselves with chronic illness, just like an adult may be invited to do in therapy as part of processing childhood trauma. There is an inherent loss with chronic illness- it’s a loss of the person you understood yourself to be and who you envisioned yourself being in the future.
I can’t say that I have ever been a carefree person, but I absolutely moved through the world with less anxiety before CIRS. CIRS has taken me to some of the most hopeless and helpless places internally and replicated challenging aspects of my childhood in ways only the universe could’ve orchestrated this masterfully. It has also stolen aspects of my early 30s as I have so hoped to become a mother, and I am all too aware that my biological clock is ticking. I feel the anger of not having chose this, of how difficult it is to change the circumstances that perpetuate mold toxicity, of how this impacts families across the country with no supports in place since indoor air quality in not federally regulated.
I can sense where people are in the five stages of grief in the support groups I’m part of for CIRS. I hear about a lot of partners and elderly parents in denial of mold being a problem. I read posts from people who are so angry that they aren’t heard, that another remediation attempt failed, and that they’re sick all over again. I feel the palpable depression from those who feel the weight of the sadness that comes with losing your home, your possessions, your relationships, your job, and ultimately, what feels like a loss of your identity. I even sense the bargaining where people know that mold avoidance is necessary, and they choose to just dry fog or remediate but keep all of their porous belongings to try to soften the blow.
The purpose of mourning- the whole reason to make space for the heavy work of grieving- is to process the feelings and experiences around the loss and saying goodbye. The point is to get through it, in our own time and own way, so that we come out the other side with acceptance and grace, so that we can embrace ourselves and our experiences wholeheartedly.
The Practice of Acceptance
I like to think of acceptance as a practice, much like gratitude, as it will be a skill that I work to cultivate throughout the course of my life. One of my innate gifts is the ability to scaffold and titrate, which allows acceptance to feel more attainable in stages. Most of my focus in on my present situation with mold, which helps because it’s the situation that’s right in front of me. I know there will be endless opportunities to meet with acceptance in the future, but all I can be with right now is what this present moment has to offer.
Acceptance does not equal agreement, choosing passivity, or liking the situation. Acceptance is about acknowledging the reality of the situation. And it’s about embracing any resistance that comes with the situation. It’s saying, “Yes, this is happening, and yes, I absolutely hate it.” In turn, the gift that comes from acceptance is peace and the capacity to get on with our lives.
Acceptance can be our ticket to reclaiming the parts of our identity that feel comfortable and familiar. When we stop expending so much energy fighting against what’s true and embrace the situation just as it is, we can find our way home to ourselves.
Your Journey
No matter where you are in your journey, know that you are welcome here just as you are. I have resources about mold toxicity in other posts, including how to check your home for mold, how to test for mold, and what to do if you’ve found mold. I also have resources on how to find a low-mold home and the impact of low toxin living. Let me know what you’re seeking in the comments and we’ll see what we can explore and create together.
9 Considerations for Low Toxin Living
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