Our sixth Alma roundtable is a discussion between six Jewish people who have chronic illness, covering everything from how chronic illness affects their involvement with Jewish rituals, whether it’s been helpful to disclose their illness in Jewish spaces, and what the larger Jewish community can do to help people with chronic illness feel more supported.
The participants are: Julia Métraux (moderator), a rare disease zebra (she has systemic urticarial vasculitis) and writer who is trying to get through her senior year at The New School; Allison Darcy, a North Carolinian Jewish youth professional and an MFA candidate in fiction; Chayyim Holtkamp, a current graduate student studying to receive their MA in History with a focus on Holocaust and Disability Studies; Madelaine Reis, a chronic illness advocate and disability activist who is finishing up her master’s degree in Washington, D.C.; Tema Smith, a diversity advocate, writer, educator, and Jewish community builder. She has ankylosing spondylitis, a form of inflammatory arthritis in the spondyloarthritis family; Marisa Fernandez, the Program & Engagement Associate at Hillels of Westchester.
Their conversation has been lightly edited for clarity.
Whether it is a synagogue or social justice space, does your Jewish community know that you are chronically ill?
Julia: Jewish social justice spaces that I am and have been a part of do know that I am chronically ill, but that’s because my chronic illness impacts my day-to-day life. I can’t remember the last time I didn’t need accommodations or help because of symptoms, so it’s become a normal part of my life to disclose my illness.
Allison: Sort of. I am not shy about wearing braces and using mobility devices in public, including at services, board meetings, and events — I run a middle school youth group and teach high schoolers — and will give a quick “my body doesn’t work right” if asked. I haven’t often had anyone ask past that, and I don’t typically volunteer the information.
Chayyim: More than likely, yes. I have a cane that I use about 90% of the time. I have certainly encountered people who assume that I’m not disabled, but rather injured. However, I’m not a particularly quiet person about being disabled, just like I’m not quiet about being Jewish. They’re both important parts of who I am. I have a rule that I won’t tell people what my specific diagnosis is unless we at least know each other’s names and see each other on a semi-regular basis, but I have no qualms about saying I’m disabled.
Madelaine: Yes, I am pretty open amongst my Jewish community, and my temple in my hometown has known about me being chronically ill since I was little.
Tema: Yes, I’ve been pretty public about my chronic illness. In truth, it was really hard to hide. Before diagnosis I was in excruciating pain and would often either be limping pretty dramatically, or would have to lie on the floor because my back would spasm. Eventually it evolved to extreme fatigue and brain fog, and so because my Jewish community at the time was also my employer, I had to disclose to get the accommodations I needed.
At the same time, I also disclosed beyond the immediate circle of the people who needed to know because what I have isn’t well known and I figured that I could use it as a bit of an education and awareness opportunity.
Marisa: In short, yes. I work for Hillel and my colleagues know that I am chronically ill. At conferences, I make a point to take my medications at meals as opposed to taking them in my room or the bathroom because I feel that it helps to break the stigma around taking pills. In other Jewish spaces such as synagogue, it is a little harder for people to know that I am chronically ill because I don’t often present physically unless I have a fracture or am using a cane.
Was it helpful to disclose your illness?
Tema: It was really helpful. As I said, my community was also my employer, so disclosing was necessary so that we could set me up for success at work. We made my schedule more flexible, brought an armchair into my office, and generally tried to adapt as best we could.
In the community more broadly, it was definitely helpful to disclose. I’m lucky to belong to a very caring Jewish community who really expressed genuine concern and empathy, and also encouraged me to appreciate when I was feeling well and not just dwell in the flare ups, which is so hard to do sometimes.
Allison: I’ve only really done so once in a Jewish context, and it was to make a case for why students should be allowed to have CBD vape pens at events, with parental permission. I told a board that some people with chronic pain like me couldn’t show up and lead youth groups without CBD. (Though I actually am not part of “some people” in this case, the response was, “Well, don’t tell us that.”) I don’t know if it was “helpful” or not. But if I knew there were a teen doing this, even undiagnosed, I’d absolutely go to bat for them (especially since I live in a state where this would mean CBD with no THC).
Marisa: In my workspace, it definitely was [helpful] because it allowed me to seek accommodations that I need in order to be successful and to also build my own support network with other chronically ill people within my organization. I think it is also helpful for my students to know that I am chronically ill so that it normalizes what it can look like to be living with a disability — especially since there are a lot of disabled people out there who don’t present as such on the daily.
Julia: It’s led to people being a lot more understanding if I can’t show up or do certain things. Personally, I feel so guilty when I feel that I’m letting people down, so laying out my limitations from the get go also gives me a piece of mind.
Madelaine: It is hit or miss. It all depends on if the person truly listens. If they don’t, then I get a lot of weird comments all the time, and it’s annoying. You know, the causal, “Oh, can you eat that?” or “What if you tired __?”
Chayyim: The only reason I don’t disclose my diagnosis is because I want able-bodied people to recognize that they’re not entitled to that information. Chronically ill people don’t have to tell them what conditions they have. That being said, telling people that I am disabled and that I do have certain limits and need certain accommodations is helpful in making sure I stay safe and to participate to the fullest.
Has your chronic illness impacted your involvement in Jewish spaces in a positive or negative way?
Marisa: Both! Positively because I feel that I can be an advocate for other people in my community by talking about my illness while serving in a leadership position. However, fast days are really hard for me. I know that within Judaism you are supposed to put yourself and your health before any of the laws, but something about not fasting while everyone else is feels alienating and as if I don’t belong, especially when people say things like, “Have an easy fast.”
Chayyim: I think chronic illness in general has positively impacted me. Sure, it sucks being in pain all the time. There are obviously downsides. But, I started getting treated differently when I started being visibly different in a way I hadn’t been before, through using a mobility aid. That got me involved in social justice and wanting to become more involved in groups based off my social identities. So I started regularly going to synagogue, joined an LGBTQA group, and helped revive a disability students club at my campus.
Tema: I would say that it has been neutral. I definitely participate less than I used to outside of work. Before I got sick, I would attend services regularly and I was an active volunteer doing loads of things like cooking, setting up spaces, and things like that. I can’t do those things anymore. But at the same time, I’m finding new meaningful ways to be involved, and now that I no longer work in a synagogue, I’m curious to see how my involvement in Jewish spaces will evolve.
Julia: My chronic illness has had a negative impact on my involvement in Jewish social justice causes because my symptoms limit the amount of time I’m able to dedicate and whether or not I’m able to go to events. If I was physically able, I’d go to every single rally, protest, and meeting in New York City, but I can’t. I need to rest a lot more than my healthy peers — this is why I think alternative engagement, like via Twitter, is so important, because then I’m able to participate in issues and express my support of causes while being sick in bed.
Allison: I live in a rural small town and the closest Jewish community is a 45-60+ minute drive away, traffic depending. When I was healthy and energetic, making the hour drive for events seemed very doable. Now, I commute that far 3-4 days a week and often need just as long to recover. At the same time, my medical costs and living situation preclude me moving any closer in the foreseeable future. I do what I can at home with my partner, but he had a different Jewish upbringing than mine and I’ve found it difficult to maintain even the sort of Jewish home life I want to without a supportive local community where we can easily attend educational and ritual gatherings.
What’s your reaction when someone says they’ll “pray for you to get well” but your illness isn’t going anywhere?
Julia: I glare at them and say, “Thank you, but my condition is chronic.” It’s hard enough to accept that my illness is permanent and likely isn’t going to get better; having people say they’ll pray for my health somewhat feels like a slap in the face.
Allison: I haven’t had that problem in the Jewish community, thankfully. When others do it, I roll my eyes and let it be. Whatever helps them feel better, you know? People don’t know how to deal with the idea that a human could be sick or in pain with no hope of recovering, because then they have to acknowledge that could one day be them, too.
Chayyim: Yeah, I’ve only ever had Christians tell me that they’ll pray for my illness to go away. As many chronically ill and physically disabled folks have experienced, I have had that awkward experience of a person placing their hands on me to pray my illness away. I once was riding the bus to class and a man next to me was asking questions about why I had a cane. I was new to being disabled, like six months after my diagnosis, and had developed no scripts or chutzpah on getting him to not ask me invasive questions. He asked for my name and told me he was going to pray for God to cure me. Then he very emphatically asked me if I believed in God. It was just super uncomfortable! Then the guy across from him thought that was the perfect time to ask when I was going to die. It was a comical nightmare.
Marisa: Just yikes! It often feels like prayers for healing are cure-focused when there is so much more to chronic illness than a cure. I like to use a phrase that I picked up from Eli Clare in his book Brilliant Imperfection: Grappling with Cure which is, “Wishing you less pain.” The sentiment reflected there is so important because it relays a hope that you’ll be back to your baseline, not a “cure” or some sort of unattainable model of health.
Tema: The closest I can think of in a Jewish context is the Mi Shebeirach prayer that we say in services that prays for a complete healing (a refuah shlemah). I really struggle with that prayer knowing that I will never get better, and actually have written about how I find it alienating. I understand the intent of people who wish me well, and that I will get better, but I think it’s based on an incomplete understanding of illness — one based in a binary between sickness and health where you either move between those two spaces, or you die, and there’s no other alternative. Seeing as I live kind of in between those two spaces all the time, as do many others with chronic illness, I have advocated for finding new language that prioritizes acceptance of our illnesses, since for many of us, just accepting and living with our health the way it is, is a huge part of the struggle.
Madelaine: I have had the Mi Shebeirach prayer said for me, which was when I had major surgeries, so in essence, it was right to do because they wanted me to heal from surgeries. But it is hard after that, because some people don’t understand that yes, I had life-saving surgeries, but I am still chronically ill, and that won’t go away.
Does your chronic illness ever get in the way of practicing Jewish rituals you’d like to do, i.e. fasting on Yom Kippur?
Madelaine: It does — I can’t fast, and I haven’t for years. I have learned not to feel ashamed; it is a mitzvah to take care of my body. However, I do have trouble attending break fast after Yom Kippur because I can’t eat much anymore, which makes being around all that food a bit tricky.
Tema: I also can’t fast for Yom Kippur or any of the other fasts. I also struggle with rituals in synagogue, for example, that require us to be on our feet for long periods of time. I can’t build a sukkah for myself, and I am often too tired to visit other people during Sukkot. I also struggle to stay up through the night on Shavuot. In other words — lots of the rituals that I love have been affected.
Allison: A lot of what I miss out on being able to do is the act of creating a Jewish home. I used to dream of baking fresh challah every week and cleaning the whole house on Friday — I know, very domestic of me — and those things just aren’t possible. I also have friends who have found great meaning in the recitation of Asher Yatzar as an act of mindfulness and gratitude for having working bodies, and I haven’t been able to make a habit of it myself. My body doesn’t work. It isn’t something I’m grateful for. And maybe I should be more thankful for what I can still do and what I still have, but God and I aren’t settled on that right now.
Additionally, I just miss having a real Shabbat. My body chooses my day(s) of rest for me, and sometimes by Saturday there are just secular things I have to do to make up for that. I hate it, but it’s where I’m at. Because my partner and I don’t often go to services, we try to read some sort of modern Jewish philosophy or theory on Shabbat, but we’ve even lapsed on that as of late.
Marisa: There is some sort of weird guilt that exists when I can’t fully participate in Judaism and on days such as Yom Kippur and Tisha B’av, I often end up isolating myself because it feels as if there is a veil of separation between me and the Jewish community.
Have you ever been shamed for not practicing Jewish rituals that you’d like to do but cannot?
Julia: I’ve definitely gotten glares from people, in more religious spaces, when they see me eating when, according to them, I’m supposed to be fasting. I think social justice spaces are more conscious of recognizing that people have real, valid reasons for not participating in certain rituals.
Allison: Oh, I’ve been kind of passively shamed for not being able to attend synagogue events or volunteer for things as often as I’d like. It may be in my head.
Chayyim: Luckily, no! Any time I have said I cannot fast due to my heart condition, people have been very understanding of my inability to fast. People usually get mad at me if I still tried to fast anyway.
Madelaine: I have not. I think it helps that my temple has known me my entire life and has been through countless surgeries with me. So I am pretty lucky, but I am sure I’m an outlier.
Marisa: No, it mainly comes from within, sadly.
How do you balance needing to rest and staying on top of things over particularly busy times like the High Holidays and Hanukkah?
Allison: LOL, balance. No, no. I don’t do that. I just panic and then am (extra) tired for a month after.
Julia: I’ve started to recognize that it’s not realistic for me to go to everything that I want to go to. Sure, a service might be great, but missing one in order to rest so I don’t get more sick is more important for me right now.
Madelaine: It is tough. I honestly have missed holidays because I needed rest. And prioritizing rest is a tough thing to do. When I do try celebrating holidays, I just go and get the latke mix and matzah ball soup mix rather than making it from scratch and that helps me use less energy that I can save for other stuff.
Tema: This one is hard, especially when it comes to cooking large meals at Rosh Hashanah and Passover, for example. I’ve learned to live with not being up to doing much anymore, and also having to be fine to excuse myself from the table to lie down if I need to. It’s been an exercise in pacing myself and being less ambitious about what my mother and I cook for the big holiday meals.
Marisa: I’m observant and truly enjoy going to services but it’s sometimes difficult to balance my work as a Hillel professional with my own spiritual health, especially during a flare-up. So even though I haven’t been to synagogue since Yom Kippur, I try to incorporate spirituality into the everyday by praying on my own with a personal siddur. Though I understand the importance that Judaism puts on being with a community, I try to get that fulfillment through my work with my students and do my own spiritual practice on my own because I often don’t have the energy to get up on a Saturday morning and go to synagogue after working a full day and leading a Shabbat service the day before.
What could the Jewish community do to make you feel more supported?
Chayyim: One of the synagogues I used to attend would consistently remind people that when we were asked to rise, this meant of either body or spirit. Our rabbi would remind people that some of us cannot rise of body, either ever or consistently, and that’s okay, but we all can rise of spirit. Having that be said made it feel so much easier to sit down when I needed to.
Allison: My synagogue recently implemented a policy where if you as a member don’t volunteer to do certain things (in this case, set up and host an oneg) you can be fined. I’ve heard of similar policies elsewhere. It’s a problem. I wish I had a variety of accessible options to support the community. What if I could give a week of time to running social media instead, for instance? I also think this is a place where communities could make space for those with lower financial means to give back in other ways, but that’s another conversation (albeit with many overlaps). This is partially just my needing to disclose my (invisible) disabilities to the right people — I don’t know if they’d still give me this ultimatum — but the emotional risk of not being believed prevents me from finding out. But that’s a thing society in general needs to change to make me feel more supported, not the Jewish community specifically.
Julia: I wish more social justice spaces — not just Jewish, all of them — could recognize the importance of alternative engagement. I’m not a social media activist because I’m “lazy” or I don’t recognize the importance of direct action, but I have to take care of my body first.
Tema: I would love it if the Jewish community could add talking about chronic illness to discussions about accessibility, and find ways to adapt ritual language to be more inclusive of people for whom life doesn’t exist in a binary between sick and healthy.
Madelaine: And to be open-minded and listen. Jewish traditions teach us that we are obligated to create equal access for all people to participate in Judaism; it is every Jewish person’s job to remove those barriers people face.