What Really Goes Through My Head When Others Ask 'How Are You?'

We all get asked “how are you” on a daily basis. As someone who is chronically ill, this is how I often would like to respond.

How are you?

I’m chronically ill, so I’m not sure you really want to know.

How are you?

I am out of my wheelchair and using a roller, but no, I’m not getting better, just doing better.

How are you?

I have a congenital defect in my immune system.

How are you?

I had eight physical therapy appointments this week.

How are you?

I saw three of my seven specialists this week.

How are you?

I received four new diagnoses today.

How are you?

I had to fight with HR at my job to get reasonable accommodations for a job I’m not sure I can do, but I have to because I need insurance and things like food and a place to live.

How are you?

I am tired of people hearing about one of my diagnosis and telling me they know someone with that and “it’s not that bad.” As if any of my diagnosis leave each other alone. As if the very treatment of one is not “contraindicated” to another.

How are you?

I am tired of people telling me to “be more positive” when I explain there is no cure, nor is there likely to be, because my illness is rare and no one is really looking—except in a general way. Oh, and we don’t support undirected research anymore. I’m just being realistic.

How are you?

I am tired of people telling me “how positive my attitude is” as if I don’t have days of hope and hopelessness. I still have no choice but to place one foot in front of the other, because no one gave me a choice.

How are you?

My body hurts. Not the kind of hurt that anyone without chronic pain can ever understand. The kind that wakes you up at night to vomit, on the night you can sleep at all.

How are you?

I am tired. Exhausted. No, not the kind of tired sleep fixes, because I also battle pain, and I constantly have to navigate a world that is inaccessible to me. I can’t remember not feeling tired.

How are you?

I feel alone because I feel like no one really wants to listen to how I am. I feel like just being alone.

How are you?

I miss myself. I miss who I used to be. I miss doing the things that made me love life. I miss my friends who have disappeared.

How are you?

I’m scared all the time. I am scared the few who have stayed will leave. I am scared because my primary diagnosis alone is potentially fatal. I am scared because any one of my sub-diagnoses would be enough to make anyone scared. I am scared because I don’t know how to face tomorrow.

How are you?

I am here, and that is a victory.