“I am fine.” Three words I know as rote. I say them frequently and without hesitation. I utter them as much for others as I do for myself. My reality is too much for most. At times it is too much for me. This packaged response is almost expected. And that is OK.
Social norms are different for someone with chronic illness. I learned from a young age to hide behind packaged etiquette, conversing with a social grace far beyond my years. I felt the safety of idle chitchat. Little did I know this would become an art form.
What does it mean to be fine? It depends on the day, and at times, the hour. It means I am saving you from details that might make you uncomfortable. The persistent pain, sleepless nights, and exhausting dawns are my norms. Yet, they are impossible to understand. And I do not expect you to. I say I am fine because I have to be. I choose to be fine because I want to be. I pray to be fine — it sustains me.
I say I am fine because I am weary. I begin my fight from the moment I open my eyes. I harness precious energy and focus intently on tasks I once did without thought. I am holding onto “fine” in hopes it will someday be true. I can only control my reaction and thoughts. Hence, you can bet I will hold onto hope every chance I get. If my narrative is fine, then so too am I.
I am weary of being anything less than fine. To admit my truth would be to open a faucet that is so hard to shut. Almost immediately, the trickle of well-meaning platitudes begin. Clichés belong in hallmark cards. They can level someone with MS. I have been told I do not look sick. That they imagine everyone wishes to look as sick as I do. That tomorrow is a new day. That I should be grateful I am not worse. I understand these are said without malice. However, it is often easier to avoid hearing them altogether.
The faucet is just warming up. Given time, everyone is suddenly a neurologist, dietician, physical therapist, and psychiatrist. I am told how to heal myself then asked why I have not yet done so. This is incredibly defeating. I do not want to have MS. I listen to my doctor. I do what I am told. I eat the best I can and move as much as possible. I am told to beware of this medication or that because they know someone who died of MS. I would rather not hear of anyone dying due to MS. Shocker, I know.
Ultimately, I am somewhat private when it comes to my struggles. If my pain or insomnia is bad, or my disease is on the prowl, chances are you will not know.
And that is fine.
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