Body Betrayal
The person I was before my diagnosis with trigeminal neuralgia (TN) feels like a version of myself from a parallel universe. That version of myself is fearless and tireless; she is disciplined and hyper-productive. She never stops. That portrait is in sharp contrast to who I am now—a woman who is no less disciplined or ambitious, but who lives with constant, disruptive pain. A woman in need of a slower pace.
The bridge between who I was “before” and who I am “after” is paved with my fragmented self-esteem. Because chronic illness breaks down your confidence. It dissolves who you believe you are and challenges your sense of self, and you are then forced to recreate yourself into someone wholly unexpected.
Shouldering shame
Not enough people talk about this.
There is a cloak of shame veiling the chronic illness experience. This shame is borne from a new set of limitations and needs that the chronically ill need to be mindful of and which the world isn’t sensitive to. Because chronic illness is often invisible, we live in a world where the chronically ill are not fully believed or supported. Such dismissal reinforces the breakdown in self-esteem that illness itself instigates. This leads to a self-destructive cycle of questioning worthiness.
And this is shame at its worst.
Chronic illness is already isolating and can be quite lonely, so judgment and a lack of empathy isolates the chronically ill—people like myself—even further. I want what everyone wants: to be seen and heard, especially when I need to voice those aspects of my experience that affects how I see myself and how I interact with the world.
Perhaps if the world understood that better, people living with chronic illness could start rebuilding who we are without shame.
Crumbling sense of self
Can you imagine living in a body that is a consistent betrayer of everything you thought you knew about yourself and your illness? This insecurity is at the heart of what it means to live with chronic illness. I want to accept, forgive, love, honor, and trust my body, but that is juxtaposed against all the ways in which it fails me at my most tender moments. My body is a system of symptoms and side effects—and it’s also a psychological minefield, where my self-esteem is a casualty.
Here are some of the reasons why my self-esteem and confidence have eroded:
The comparison to who I was “before” my diagnosis and all I was capable of then that I’m unable to easily manage now.
The feeling that even simple tasks take significant effort.
The brain fog from pain, medication, or fatigue—or all three at once.
Not knowing or understanding what’s happening in my body.
Lack of trust in my body and how every unfamiliar sensation can feel like a threat.
Overdoing it so much so that I won’t be able to walk one more step...
...Or overdoing it so much so that my pain will intensify.
Feeling dizzy and fear of passing out in public.
Fear of becoming symptom-free only to have a painful relapse.
Fear of my condition getting worse.
Fear of developing other health issues.
Having to change plans at the last minute because my pain is too acute.
Having to change plans at the last minute because I’m physically and mentally depleted.
Fear of no longer being included or invited to outings or events.
Social isolation and how the world can shrink to the size of my bed.
Fear of disappointing my loved ones.
Fear of losing precious relationships.
The social stigma around chronic illness.
A general lack of awareness, understanding, and empathy for my condition.
Being less predictably productive on a daily basis.
Fear of being perceived as lazy because my body needs more rest.
A slower pace.
Feelings of failure.
Gaining weight and not feeling comfortable in my own skin.
Other physical changes that happen as a consequence of illness, medications, side effects, and lifestyle changes.
A change in my physical ability.
Feelings of self-doubt and unworthiness.
Shame over my limitations and advocating for my needs.
The uncertainty of chronic illness and how it will continue to affect my life.
More pain and fear of more pain.
What does all this mean?
It is hard to write a list like the one above and not feel discomfort. These reasons exist all at once, but I will say that I’m not always aware of all of them at the same time. I didn’t write this list to solicit pity for myself or others living with chronic illness. Neither they nor myself want your pity. On the contrary, I write a list like this to say that despite long lists of how chronic illness has changed me—how it has changed us—despite how betrayed I can feel by my body, I can see how people living with chronic illness are living crash courses in hope and raw self-esteem.
Chronic illness may be testing me in ways above and beyond the known effects of TN, but it is also demanding that I show up for myself in ways that I never have before. My body is a warrior, a marvel of biochemical engineering, and my condition is forcing me to appreciate my body despite my insecurities and fears.
Because what I’m really fighting for is to feel good, especially when it’s hard like when the pain is battering my body in a hurricane of aching, burning, shocking, stabbing, numbing sensations.
Facts of my life
Recently, my father—the one who examined me the night TN became part of my story and immediately recognized the symptoms I presented—said to me, “I don’t want you to think that you’re doomed for life because of this.”
And what I said to him is my truth: I don’t think I’m doomed. I don’t look at chronic illness as doom. There is a chance that I could wake up tomorrow and my TN mysteriously disappears. But given what is known and observed, that is doesn’t seem likely. There are cases where TN goes into remission for years—seven years is the longest I’ve heard of—but then it comes back as if it never left.
So I told my father that I look at it like this: I will likely have TN, and chronic illness, for the foreseeable future. That could mean just another day or it could mean 30 years. But right now, it is a fact of my life, just like the facts of my dark hair or brown skin.
And I will learn to live with it to the best of my ability.
I will rebuild myself over and over again, if I must.
This is really about you
When my self-esteem feels shaky or even battered and bruised, I’m beginning to realize something: that all those possible reasons for why are rooted in the past or an unknown future. I’m either comparing myself to who I was “before” or I’m anticipating details to “after” that are impossible to know. But there is no room for those reasons when I’m allowing myself to be present in my body—even if that means just being present with the pain. In present pain, there is no room for the past or the future; there is just what I need now to take care of myself.
I know that I romanticize who I was before my diagnosis. I know that anyone living with chronic illness is likely guilty of this as well. In my most insecure moments, I believe my past self to be bolder and brighter than who I am now. But I know that’s not true. My life wasn’t perfect then and it isn’t perfect now. It may seem like I was fearless and tireless, but I’m prouder of who I am now: a woman unwilling to compromise on her health, a woman who has a stronger sense of self and knowledge of what she wants.
I want you to know that you’re not alone. You’re not alone with all the ways in which chronic illness has shaken the foundations of your self-esteem. When you are aware of those reasons, all the ways in which you feel your body has betrayed you, I want you to remember that none of those reasons have anything to do with who you are in this moment.
Feel your feelings. Ground yourself in your present. It’s not an easy thing to do, but the more you can do that, the more you’ll be able to see that your reasons are like mine: full of what’s behind you and what may come, yet not enough of who you are—and what you need—right here, right now.
