Wednesday, September 22, 2010

Is Being Chronically Ill Heretical?

(I don't talk about religion often, so humor me...)

Since my boyfriend is more religious than I am, I have probably taken part in more religious activities in the last six months than I did in the past few years, combined. This is mainly because, with illness, came a crisis in faith. I questioned a lot about my religion, and I still do, but I am trying to remain open-minded and take part.

However, I do feel that being chronically puts me at odds with my religion.

For instance, I don’t usually fast given that I have to take my medication with food. And when you look beyond the major holidays, there are a lot of fast days in Judaism.

Another example was at a service I went to several months ago with my boyfriend. He had told me ahead of time that many people sit on the floor during a certain portion of the service as a sign of mourning. In my head, I figured that I would stay seated in a chair because of my hip. I knew that getting down would be okay, but getting back up would not be so easy.

Men and women sit separately from one another, separated by a cloth and wood barrier. Through the barrier, I could see that there were a few men, of various ages, still sitting in chairs. But as I looked around my section, all of the women were sitting on the floor. I followed suit because I did not really want to have to deal with the judgment that I know would ensue. And I don’t know any of these people well enough that I would give them details of my medical history to explain why I stayed in a seat.

While Judaism dictates that you shouldn’t follow ritual at the expense of your health, that doesn’t mean that the people around you won’t judge you because of a perceived lack of observance or religiosity.

So does my being sick go against my religion? Of course, not literally. But in the figurative sense, it seems to me that from a public standpoint, my being sick limits me in a way that makes me appear less observant. But it’s not even a fact of observance. I feel like it makes me seem like I don’t care, like I’m somehow anti-religion. Like I’m thumbing my nose at ritual and tradition.

And that is not the case. One of the reasons I had stopped attending religious services when I got sick was because I felt my heart wasn’t in it, that my observance was disingenuous, and I didn’t like that feeling. So now, when I go, I try and put as much as I can into it. But I don’t want to develop social anxiety, and worry every time I go to services that someone is judging me. I know that in reality, I am less religious than most of the people that attend this particular branch of services. But I always dress appropriately, and participate to the fullest extent possible. I guess what I’m trying to say is that I’m doing the best I can.

And maybe I’m wrong. Maybe these people wouldn’t even have batted an eye if I would have stayed seated. But it put me in a very awkward position (no pun intended). I ended up sitting on the floor for about 45 minutes. And the next day, I was pretty stiff and in pain.

This situation has been eating at me, I think mainly because the judgment that I so worry about is really what goes against religion, rather than whether I stay seated or not. We are supposed to be able to be compassionate, not judgmental, and able to put ourselves in other peoples’ shoes. And yet, I can only imagine what that group of women must have thought, if I would have kept my butt firmly planted in my chair. I’m sure that they would never in a million years have considered that the reason is because I’m chronically ill and have a bad hip, amongst other things.

Maybe some people will say that the judgments of others don’t matter, regardless of what they are. And that as long as I’m doing my best, that’s what counts. But it’s hard to erase the possibilities from my mind.

And here’s another example, just to prove that this isn’t my personal problem with my religion. What about someone who has Celiac’s Disease (gluten intolerance)? What if they want to keep Kosher, but the products they have to buy, aren’t Kosher, as I suspect many of them aren’t? Certainly, from a religious point of view, I don’t think anyone would suggest that they should risk all kinds of medical complications by eating a regular diet, albeit a Kosher one. But I can imagine that they would get a lot of flack for this from the people around them.

I guess the issue really at play here is tolerance. No matter how together we try and make ourselves seem, there are always going to be people who see our illnesses as character flaws, making us seem less reliable, less together, and even less religious.

Personally, I try not to judge people based on their religious predilections, mainly because mine have been evolving. I went to Hebrew “Sunday” school from kindergarten through my senior year of high school. While I lived under my parents’ roof, I observed all major Jewish holidays. College was a time of questioning in that I didn’t feel like I fit in particularly well with any of the religious groups, although I was quite involved with culturally Jewish classes and activities. And in grad school, my health led me to a place that provided the opportunity for me to question a lot of the tenets of my life, not just religious ones.

I’m sure some people would say that I should let the judgers judge and look the other way, that if I’m observing the way my heart tells me to, that should be that.

At one point last year, I even enlisted the advice of the sister of one of my good friends, who is a Rabbi. I wanted to know what my religion said about young people getting sick, or all of the other bad things that can happen in life, that seem to defy explanation. We didn’t speak about the judgment of others, but we talked about the anger that I felt toward G-d and myself, and that maybe this source of conflict would be a way to re-engage with my religion.

And it’s interesting now to be at a place where I have begun to re-engage with religion, only to find that what I sought to get away from, is exactly what I am experiencing. Places of worship are not courts of law. I feel like they should be the one place where judgment takes a back seat. And I believe that spiritually, it does, but realistically, where there are human beings, there will always be judgment.

Don’t get me wrong. I’m not saying that rules are meant to be broken. But some of us have very real aspects of our lives that keep us from being “observant” in the traditional ways.

This year, our Rabbi, who is new, made an announcement, saying that he didn’t want there to be any heroes in the name of fasting. He said that if you have medical reasons for eating and not fasting, that you should by all means follow those. I’ve never actually heard a Rabbi say this before. I really appreciated it, even though I did end up fasting.

I guess maybe what I’m trying to say here is that what I love and most appreciate about my religion is the personal meaning that I get from it. And I guess I just wish that there weren’t core parts of me that make me feel like I can’t reconcile these differences.

Here are some questions to ponder: How do you view your religion in relation to chronic illness? How has your observance been impacted by being chronically ill?


  1. I totally understand. I love our church but I avoid going because I can't stand for very long during the service. Church is in the morning when I am most stiff. I don't want to sit in front because I don't want people to judge me if I am sitting while everybody else is standing. Also afterward everybody stands in a long line to shake hands with the pastor. I can't do that. Then everybody likes to stand around and talk to people. They are a very caring and social group and I am lucky to have found them but I CAN'T stand long enough to talk to someone. I actually found a church I like and it sucks that my pain makes it more complicated.

  2. Good questions!
    I think that religious services tend to be the intersection of our private and public lives. In private, we are free to be ourselves, in public we tend to hide our illness. (I don't even like the word illness! Condition maybe...) So what do we do in the middle?
    It seems like it should feel like home, but it isn't really like my home with all these other people here!

    What works for me is that there are a few of my friends there that do know, and other people that I know have difficulties with things like getting up (or down). I sit by them.
    And I try to be a little more transparent than I would be in public. Both because it may help others that are trying to look normal even when it is impossible, and because there is nothing wrong with not being able to do something. G-D made me the way I am, so it must be ok!
    I struggle with not being able to volunteer to do stuff that I am not physically able to do---like help with the little kids (too much illness, floor sitting and activity). Because "I don't look sick"! But I know that it is really ok, I just have to keep reminding myself. (and saying sorry, I'm not able to do that)

    It is a constant adjustment, just like the rest of living with a condition or two is.

  3. It's hard to work with little kids when you're taking immunosupressants. I had to ask for older kids instead of toddlers. Then a kid coughed in my face and two weeks later I had bronchitis; I've had to quit teaching Sunday school completely because I just can't risk exposure to the germs.

    As for standing, I stand when I can and sit when it's too painful to stand. I don't kneel. A couple times someone has come to me later and said that they noticed I was sitting, so they wondered if I was feeling okay. We have people stick around to visit after service, too, but there are chairs available and I try to grab one early. There will always be judgemental people, but you might be surprised at the number of people who are understanding, too.

  4. I've grown more irritated with religion over the years because of the way people use religion as a way to explain or blame the badness or praise the goodness in their lives, or place a burden on a Mysterious Dude in the Sky.
    I have a nice, study belief system that I keep private unless asked. My being ill may or may not have been the design of some unknown creator, but that's not for others to comment on.
    I don't know, I guess I get grumpy-face about it all ;)

  5. This is a tricky topic. I suffered a knee injury while in high school that seriously impacted my ability to participate at church for several years. While I felt somewhat guilty for not standing (or kneeling) with everyone else, I decided that G-d knew that I standing, or kneeling, in my heart even if my body wouldn't allow me to do so. Most folks were understanding, but it was also my family's church where everyone knew me and knew my situation, so there was very little judgement.

    My current religious beliefs have evolved fairly far from my Congregational church days. I, too, went through a period of seeking in my college years. My communion studies encouraged me to examine many faiths, and I attended a Catholic college where I studied Native American faiths and Zen Buddhism in addition to my majors.

    My current faith is closest to Deism, and has been so since before my health issues became serious. I do not participate in organised worship, so clearly conforming is not an issue. I mainly experience criticism from others who see me as being without faith, and a lot of pressure to turn to their faith, for comfort or healing (or both). While I had heard some of these opinions before I became ill, the addition of sickness seems to make people much more vehement about it- knowledge of my health problems seems to make people worry more about my soul.

    This has been fairly trying. When I am already tired and run-down, the last thing I want to deal with is having to defend my faith. I accept prayers for my health gratefully- I may not personally believe in an intervening G-d, but I put a lot of stock in good intentions and love of others. This conflict has caused me to be much more reticent talking about my faith, however, and occasionally causes some strain with my family.

    Back to your situation- if this is a place where you plan to worship regularly, maybe it is time to talk with the rabbi- he sounds understanding and maybe can help ease you into a less anxious place when it comes to participating. *hugs*

  6. I forgot to mention the whole standing thing. Plus standing and having to hold a book in the air, I thought my thumbs and wrists were going to fall off.

  7. I think Elizabeth has a very good point. Your Rabbi seems to be very much in tune with folks who have health issues. He would no doubt be a good sounding board, and perhaps offer suggestions as to how you can participate to the best of your ability.
    There are/will be judgemental folks inside your Synagogue and outside. Folks don't see our "invisible illness," unless we share our health issues.
    Good luck. I tend to think that a relationship with G-d is very personal, and can be maintained outside of organized religion. But then, that's just me and how I look at spirituality.
    Good luck with your health issues and attending services!