One of the core cruelties of chronic illness is that the condition itself can muffle your ability to describe what is happening to your body and brain. In my worst moments over the past year, I have often spent weeks to months with my powers of expression muted, the words bobbing up transiently for air before disappearing back into a preverbal ether. I was “in there,” but there was no telling what would bring me out.
When significant improvements occur, I can suddenly speak, but by then the problems are often past tense anyway. From an email to my doctors after one such breakthrough: “I woke up feeling ten times better mentally than I ever do in mornings. There was less fog, less low motivation, less depression and anxiety, less weird dizzy or swimming feelings, less hypersensitive emotions.”
I had not been able to arrange those various symptoms into a coherent list for months, except for during small rare bursts of adrenaline. The symptoms would seal me in and prevent me from effectively seeking medical help, let alone support from friends, the actualization of writing down my experiences, the empowerment of learning about my conditions and meeting others who live with them, or really any kind of enjoyment or pleasure at all.
Alone with my infirmities and demons, I was backed into a corner to either succumb or recognize my worth and slowly dig myself out. It was adapt or die. When you spend any period of time so limited that the mental energy to watch a five-minute YouTube video often eludes you, you learn to cut the bullshit real quick. The little embarrassments I had over having such excessive needs just couldn’t be taking my energy anymore. Nor could anger at not having a different situation, someone else’s life. Conflict takes energy, including conflict with oneself. I am becoming better at sensing whether something is really worth my limited resources.
I don’t have a job. I am bored and at home a lot. I don’t do much. But I also do a lot. I work damn hard in ways others won’t see, and that sometimes I don’t see either. And yet, sometimes just existing and knowing your friends and family know you exist is enough.