Learning How to See Invisible Illness

She looks fine. She always does, always did. Appropriate clothing, hair combed and a soft smile on her lips. She speaks to our class—she always has something to ask or add to the conversation. Her grades are stellar, and she seems to have friends. What’s the problem?

I was 13, 14 years old when it got intense. I can’t recall when I first started feeling depressed or when the waves of self-loathing began. But by the time I was a teen, my inner life was a mess. The more competent I seemed on the outside, the more I was hurting inside. Low self-esteem gave way to clinical depression, anxiety and on-going, intense suicidal ideation. 

How, I wondered, couldn’t people see it?  

And yet, I was afraid of people seeing it. I knew something was wrong, but I figured I was just defective, and so it was my job to pretend to be okay. To do everything I was supposed to do as a young adult, so no one could see. I didn’t want to disappoint those around me, especially my parents. The more I hid, the worse I felt. But the idea of disappointing people was too scary. I kept my head down and my façade thick. 

It worked, sort of. 

I had lunch with the woman who was my best friend in junior high and high school. She was visiting Denver, where I live, to explore the mountains of Colorado. We had not been in touch for years, so it was wonderful to see her. One of the first things she said to me was, “I didn’t know.” She had found her way to my website, where I have posted articles, among other things, about my struggles with mental illness. “I didn’t know,” she said. “I wish I could have helped.”

Mental illness, like many other chronic conditions, is often invisible. Ashamed of our struggles, we try to hide them, to not be a burden, to not be a freak. I have both ongoing, severe mental health challenges, and I also have chronic physical difficulties: chronic fatigue, chronic migraines and persistent dizziness and balance issues. And the only one you might see is my vestibular system run amuck, because it causes my balance problems, and I often use a cane or even a walker or wheelchair when things are really bad.  

The thing is, I have my balance issues under control. I know when to ask for help, and, aside from walking in the dark or in the snow, I don’t often need help. But the cane is visible; the other stuff, not so much.

For those of us with chronic, invisible illnesses, from bipolar disorder to lupus, from being on the autism spectrum to having multiple sclerosis, our question is: How do we make our needs visible? Is there a way to preserve our privacy and still get what we need? How, in our communities beyond just family and close friends—in our synagogues and our book groups, among our friends and the parents of our children’s friends, with our colleagues and our karate partners—do we ask for help?

The flip side is also a challenge: How do our organizations and synagogues, friends and colleagues, recognize us in all of our splendor? So many people in our lives—those close to us and those to whom we just say “Shabbat shalom” at Kiddush—want to help. They simply don’t know what to do. How can we make our invisible illnesses visible?  

As individuals with challenges, part of it is upon us to risk telling our truths. It has been scary for me to write about my mental illnesses because of stigma, the risk of being shamed. And yet the more I speak and write about my struggles, the more people I have in my life checking on me. When I go missing from shul or seem stressed at a committee meeting, I now have friends who reach out, express their concern, remind me they care, and it is okay to ask for help. It has been a learning curve, for my friends and for me. It is easier to say, “I am fine,” when asked, but when I say, “I am depressed, or I have a migraine, or I am beginning to panic,” I have a circle of family and friends who listen. These are people who have promised they will be present for me when I need help. And so I am learning to speak up. Not in every setting, not with every person I encounter, but with enough people to have it matter.

For friends watching from the outside, it is hard to know what to do as well. Should I ask if a friend seems anxious or down or neuro-divergent? Will that embarrass them? If I don’t ask, how will they know I care?

And this is tricky: How to make my concern clear while also underlining that I am not judging; I just want to help. Those very words can be transformative, both for the person with an invisible illness and for their community. “I treasure our friendship. I care about you just as you are. And…is there anything going on where you might need my help?”   

In our wider communities, we already instinctively reach out to help those who visibly need it. We hold a door open for a mom with her hands full of children and diaper bags. When someone joins us for Shabbat services, we whisper the page number; for visitors who seem more confused, I might hand them my open siddur and point to where we are on the page. 

I go to a conservative synagogue where, many years ago, on the morning of a bat mitzvah, there was a family of five sitting quietly behind me for the whole service—all three hours of it. The children sat so nicely, not thumbing through the siddur, not reading books, not playing with toys. They just sat. And so when we got to Aleinu, very near the end of service, I turned and said to the parents, “Your children have been SO good. And…we are almost done now, and then there will be food.” They smiled and relayed both messages to the kids. I did this because I realized they were probably not Jewish and didn’t know how many more hours there might be. I looked, I saw what appeared to be a need, and I reached out. 

In what ways can we as individuals reach out to others, even people we don’t know? We ask. We exchange a smile. We say how happy we are that person or family is present at synagogue. Someone has been absent from school? We send a text saying, “I miss you.”

For institutions, part of the way we embrace all comers, those with major illnesses affecting their lives and those whose broken places are more healed, is by signaling that all belong here. We have ramps for those who use a wheelchair and room signs (especially bathrooms) in braille for those who are blind. Shuls, especially, should have mental health resource sheets in their lobbies and, perhaps, in their bathrooms, so those who are struggling might discretely put the phone numbers of crisis lines into their pocket or purse for private use later. Some places      have bags of Shabbat toys for children to use during services and afterward; this is a clear overture to young families, but it also reminds the whole congregation we treasure our children; we want them here.

These accommodations, however, do not help only those with a particular need. Rather, they show we know people have illnesses, severe and mild, obvious and hidden. If we really want all people to feel at home in our synagogue, then we want to signal that in as many ways as possible. We strive to create a culture where if you need something, it is safe to ask. We have magnifying glasses for those whose reading vision is failing, and we have links to mental health crisis lines for those who need support. Both these needs, all of these needs, are valid. 

Concretely, what else can we do? Mention mental health from the bima, over and over again, whenever we say a mi sheberach for the ill. Remind our chesed committees, our caring committees, that families need support, not just when there is a new baby or a recent death. Can we check in six months later to see how the new mom is doing or how grief is playing itself out?  

It also helps to understand, individually and as a community, the limitations folks with chronic illness often have. What seems unreliable to the outside observer is simply the attempt of a person with an unseen disability to participate in communal life. So many chronic, invisible illnesses are terribly taxing on the person who is ill. A woman may simply have fewer hours in the day to function than the average person, and many simple things can be difficult. And so she may try to be part of a committee or taskforce, or even  be room-mom, and then discover she does not have the energy for the evening meeting, or she needs her Sunday to recover from the week in a way the average healthy person does not. A man is not “blowing you off” when he cancels a lunch date; he is simply too tired or in too much pain to get out of bed. And that pain might be physical, as when my migraine sends me to a dark, quiet space in hopes that it will pass, or the pain might be psychological. Depression does just that: It presses me into my bed, into myself, and I can’t function. A helpful response is not to blow up with natural frustration but rather to send, perhaps, a text asking what would be helpful. Sometimes chicken soup works. Sometimes just knowing someone cares is enough.

Rabbi Sandra Cohen works in mental health outreach in religious communities across North America, as well as teaching rabbinic texts in a variety of contexts from her home in Denver. 


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