Why I've Come to Terms With Not Being Able to Fully Accept My Illness

Marisa Mann de Sa
woman standing with umbrella at the end of a dock near the water.

Acceptance. It’s a word we hear often. Whether used in the context of grief, uncontrollable life events, or self-improvement, we are often taught that acceptance is something relatively attainable. It’s a paradigm shift that will land us in a better place if we just make that decision to surrender to it. The very definition of the word accept is “to receive willingly,” which is maybe why I have such a hard time with it, especially as it relates to chronic illness.

It’s hard for me to conceive of willingly accepting a life sentence with a chronic condition, especially when the unpredictable nature of that illness tricks you into thinking you are not sick half of the time.

I live with Lyme disease, co-infections, and mast cell activation syndrome (MCAS). I know all too well the cruel and oftentimes erratic face of chronic disease. There are ups and downs, ebbs and flows, good days and bad days, even days that are hard to define because they change by the hour. The very nature of such conditions makes the idea of acceptance especially arduous. There is no linear path that these illnesses follow and symptom-free days can trick you into thinking that you are completely fine.

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So how does one follow a path toward acceptance when they are continuously being thrown off course?

On days when I am symptom-free, I choose to forget (consciously or otherwise) that I am sick, that I have limitations, and that these “good” hours and days are ultimately numbered. These are my bright days, my silver lining days, my “normal person” days. I suppose there are some who might call this denial. I’m not such a fan of the word, as it brings to mind something unhealthy or dysfunctional. In fact, there is much discourse in psychology about denial being an adaptive coping mechanism in certain situations. Something that keeps us going when stressors threaten to overwhelm our ability to cope. If I walked around all day every day thinking about the countless ways my body is malfunctioning, I would feel completely immobilized, depressed and defeated. In a certain way, one might say I have never fully “accepted’ my diagnoses, that I have never completely come to terms with my illness or the myriad ways it shapes my life.

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But is this necessarily a bad thing? It’s a question I struggle with often.

I spend my good days living as any healthy person would. Of course I still have to structure my days carefully, be vigilant about my diet, and avoid overexertion. I still have to take my pills, time my meals carefully, avoid extreme heat, and limit my exposure to chemicals and toxins. With all these constraints I suppose it’s impossible to exist in a state of pure denial. I am invariably aware on some level that my “normal” is different from that of other people. But mostly I operate on autopilot and refuse to see myself as someone who is sick. Existing in this state works for the most part. It keeps me from spiraling into self-pity. It makes me feel like I am part of the normal rhythm of life. It allows me to wholly embrace and enjoy my good days.

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There are, however, drawbacks to existing in this no-mans-land between denial and acceptance (lets call it, de-cceptance).

For when my symptoms do rear their ugly heads, it’s as if I’m realizing for the first time that I am actually sick.

All of the hurt, disappointment, fear, and pain seem fresh, raw and utterly overwhelming.

I’m ripped from the safe and tranquil bosom of denial and hurled into a cold harsh reality.

Me? Sick? It can’t be!

Herein lies the pitfall of dwelling in de-cceptance. Instead of thinking “Ok, here we go again, another flare up”, it’s “What the hell is this? What’s happening to me?”

Even my husband continues to be confounded by how shocked I seem when my symptoms return. “Look you can actually see my muscles spasming! I can’t get a deep breath! Why do my joints hurt so much? Why am I so nauseous and dizzy?” And my husband’s personal favorite, “Why is this happening?” He knows that I know the answer, but he looks me in the eye with abounding compassion and says, “Maris, you have Lyme. This is what happens, remember?” It’s a rhetorical question of course. I do remember. I just didn’t want to. It just hurts too much.

I suppose I will continue to inhabit this space somewhere in the great in-between, to embrace the uncertain nature of my condition and the wild ride it takes me on. There will be moments of relief, moments of pain and indeterminate moments in between.

I will neither accept nor deny the illness that ravages my body; I simply won’t give it the satisfaction of doing either.

I will exist somewhere in the grey. I will get by. I will survive.

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