When the Community Separates from Us: Connecting with People Who Live with Chronic Illness

In 2018, I began having some weird and unpleasant bodily feelings. These sensations were the early warning signs of an onset of complex autoimmune conditions. My illnesses have degraded my life and negatively impacted my family’s life. But on most days, I focus on the things I can do and the people in my life who are my angels. I’m not just a misfortune. In fact, I am fortunate for my good life and because of the people who surround me with love.

I’ve been reluctant to write so personally, but over the past five years, I have become a member of an invisible community. Most people expect this illness narrative: “he was well, he became sick, he received treatment, and he recovered.” People who live with chronic illnesses deviate from that narrative. We never recover. We just hope that we can manage our symptoms and have more better days. The “never recover” frightens people, and many colleagues and friends disappear from our lives. We become invisible to much of the community of which we were apart. We haven’t intentionally “separated from the community” (Pirkei Avot 2:4), but at times it feels like the community has parted ways with us.

I began writing poetry to give voice to my feelings and to those who live with chronic illnesses. Because you may not see us at tefilot, you can’t ask what daily living looks like for us. We feel the sting of invisibility more acutely on Shabbat and Jewish holidays. So please – take your fresh experience of isolation and invisibility from COVID, look at the empty seats that were occupied by acquaintances and friends who can’t be there because of chronic illness (or who are there but would love some more ongoing contact with you) and call them. Those calls and visits add joy to our lives, and we will also add joy to yours.

‏לשנה טובה תכתבו ותחתמו לאלתר לחיים

Some Varieties of Pain
Pain has darkened my reality,
And warped my personality.
It lives too well inside of me,
and is stuck in my vicinity.

It wears me down,
it twists my gut.
They say, “double your infusion
and some pain might ease up.”

Neuropathy makes my skin crawl,
So many times, I have paced the walls.
Oh, this inside-out itch from neuropathy,
why won’t it show me some apathy?

My eyes burn red from inflammation,
and a detached retina is in gestation.
My mouth so parched, unlike any dryness.
It’s hard to speak, I experience shyness.

My unsteady ankles are insecure,
I walk with a cane, feet unsure.
Bone-on-bone, the last option is fusion,
An operation gone wrong, more pain and confusion.

I’ve had lidocaine-filled injections
in my right eye.
And monoclonal antibodies
shot into both thighs.

I’ve had both eyelids cauterized.
And too many scans with contrast dyes.
Come meet some varieties of my pain,
For I no longer feel its shame.

There are many like me,
who live the same.
Don’t make them invisible,
Misunderstand their pain.

We need your love,
We know its hard,
We love you back,
Your hurts we discard.

We know you suffer in different ways,
We pray, like you, for more good days.
Our hopes, our strength, and love we share,
Try more to know us, we know you care.