Chronic Illness and Pagan practice

Icon - Adaptations - red watercolor heartThe reality is that most of us are going to deal with some sort of chronic or significant debilitating illness or health issue in our lives. Shouldn’t our religious lives and practices be accessible to us at those times, just as they are when we’re at our best? And yet, we see a lot of things in books that talk about elaborate rituals, or about the importance of daily practice.

 

About this article and me:

In August 2013, I did a presentation at the Southern Maine Pagan Pride Day on how to deal with some of these issues, and wanted to duplicate my notes (with some additional links and resources I shared in the workshop) here.

I have multiple chronic medical diagnoses that add up between them to somewhere between “fine as long as I do my self-care stuff” and “mildly to moderately disabling in daily life”.

Two of them I’ve lived with since my teens (migraines and asthma), two (hypothyroidism and vitamin D issues) were diagnosed when I was in my mid-30s in 2010, when my health took a huge crash. I take medication that helps a lot, but I still have bad days (and sometimes bad weeks or even months: anyone who’s heard me about the week after I get a cold knows I sound like I’m dying.)

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What is health?

Before we get into talking about illness and coping with it, what does health actually mean? I’m really fond of a definition from Moshe Feldenkrais, who developed a body modality method designed to help you work with your body as much as possible (the Feldenkrais Method). He considered health the ability to live your unavowed dreams, and also the ability to rebound from stress or challenge. These aren’t the measures of health we’re used to hearing about, but they’re a lot more sustainable for most of us.

Because the reality is, we’re almost all going to have periods in our life when we are dealing with a significant health issues (and if it’s not us, someone close to us will be.) The better we get at dealing with this idea with grace and care and sustainable practices, the better off we are.

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What is chronic illness?

The general definitions all talk about something that lasts six months or more. But beyond that, I’d say that mental health is a chronic health issue. (And everyone can find themselves in a situation that causes significant stress, challenge, or need for coping mechanisms: grief, trauma, or just having lots of changes in our lives can bring on issues.)

Chronic health issues – and the medications or coping things we do to help – can also affect our religious lives. Some kinds of issues can really effect the amount of energy we have, or the kinds of ritual practice that work for us. (Since my thyroid issues, I’ve had a really hard time with extended meditation. I can do high-intensity ritual for a specific need with a bunch of planning and some support, but when I’m having a hard time with health issues, formal ritual for Esbats or Sabbats is often not that feasible right now. (Because formal ritual has a whole bunch of parts, and I’m currently working by myself, without people to help.)

Some chronic health issues get better over time (or we learn to cope with them better.) Some get worse over time. Many force us to make choices (This medication helps with X, but has these side effects. I need to go the grocery store and that’s going to take all my spare cope today, so I can’t do ritual tonight.)

One way to explain some of this is the Spoon Theory, written by Christine Miserandino to explain what her daily life was like, and the choices she made on a daily basis.

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Some common kinds of challenges:

Time:
Things may just take longer for us to do. Doctor’s appointments, making some kinds of meals, getting enough rest may all take time to manage.

Some people call chronic illness ‘the third shift’ – on top of what we do for work, and ‘second shift’ (taking care of the home, especially things like childcare), dealing with a chronic condition can take a lot of planning and management. If you have to spend several hours a day just dealing with food and bathing and other basic needs, you’re going to have less time and energy for anything else.

Energy:
Simple tasks may exhaust us. We may need to save our energy for work or urgent household tasks.

I try to live by the practice of planning for about 80% of what I think I can do. If I have more energy or focus on a particular day, I have things I can do, but this way I don’t feel too frustrated by what I’m doing. I’ve also made a lot of choices in my life that make it easier to spend time on the things I want to do (I live close to work, I live in an apartment that’s easier for me to keep clean, etc.)

Focus:
Many chronic illnesses affect how well we think, whether that’s brain fog or problems focusing due to pain. It may take us longer to read, or be harder to do complicated tasks, especially if they’re new to us.

This is probably the one that frustrates me the most: I optimise a lot of my choices for more brain rather than more physical energy, but there’s only so far that goes. (And sometimes it means passing up an event I’d really like to be at, or going to bed early, because I want to be able to think well for the next week. Which sucks sometimes.)

Medication or condition effects:
A number of medications change how people experience meditation, or the kinds of ritual work that are reliably comfortable for them. A condition that affects your ability to focus or the amount of energy you have will change your ritual life.

When I was first diagnosed with the thyroid issues, I talked to a couple of my religious elders about it, and they pointed out that everyone they knew with thyroid issues (or related endocrine issues: the human body is marvelously interlinked. Except when it’s not so marvelous) had had to adjust how they handled ritual energy – that things like really lengthy ecstatic rituals were a lot more complicated, and that some fairly common stuff in our tradition (longer meditations, extended periods of ritual focus, etc.) might be harder for me than it used to be.

It’s still frustrating, but knowing that that’s not just me helps a lot. Likewise, some medications (anything that affects your brain – but your body also affects your brain) can affect things like trance, meditation, experience of energy, etc. Sometimes you learn to work around this, or if it’s a side effect it can be a lot less of a problem as you get used to the medication. Sometimes you may need to make long-term changes to your practice, or save the harder things for the times you really need them (and build in lots of recovery time.)

Accessibility:
Chronic health concerns may change which Pagan events are a good fit for you. You may need to balance trying new things with rest, or make sure you can get home safely when you’re done.

I’ve got more on this below, but you might find another page on this site, about accessibility, also of interest.

Commitments:
It can be hard to make ongoing commitments (to a group, to an organization, to other people) when you aren’t sure how you’ll feel next week or next month or next year. This can make us feel like we live in a smaller and smaller world, or that it’s hard to reach out.

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Basic principles:

Be aware of undermining messages.
There’s stigma against some conditions (especially mental health ones) but there’s also  a larger thing in the Pagan community that I wish would go away – the idea that we somehow ‘chose’ to be ill, or that we could use our minds to make it go away if we just wanted to.

Bodies and brains are complicated. My body just does not make enough of a particular hormone: taking a small pill every day solves that. (And it does not store Vitamin D like it should: a larger pill helps with that.) I can do things to help with both of these, but no amount of thinking (or magic) has helped make it stop being a problem. Taking my medications (and doing other things to help) does.

Be gentle with yourself but live as fully to the edge of yourself as you can.
It can be really easy with a chronic illness to get stuck in a rut of doing just what we need to get by. That’s sometimes necessary, but it’s not really living, and we’re not getting closer to those dreams I mentioned up above.

There may be some things you won’t get to do that you’d like to. (I am never going to get to go scuba diving in this body: I have lung scarring that makes it a really stupid idea.) But in many cases, there may be things you can do that you will love, and that you can do with your body and your heart in some way.

Many people are just not aware what would help.
And it is not your job to educate the world. However, when you’re up to explaining something – what your condition involves, and what helps you out, and what’s easy for you, and what isn’t – that helps the people around you (and the people you talk to about accessible events) do better in the future.

I’ve learned a huge amount about accessibility, about chronic health issues, and about living with them, as full and wonderful a life as I can, from friends who’ve talked about their experiences. Them talking means I don’t have to reinvent the wheel: it means I can help build new things that help.

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So what can we do?

Basically, there’s several different ways to approach building a sustainable spiritual practice. First, go easy! Don’t try to do it all at once. Many of these ideas get easier if you do one, then a month or two later, do another one, and fold them into your lives.

Take a good look at frequency:

It may be more realistic to aim for ‘regular’ rather than ‘daily’ or to be more flexible with seasonal celebrations. (Either have them be less involved, or be more flexible about when you do them.)

In a bad month, I need to plan ritual practice over about 4-5 days – a day for general house cleaning, a day to tidy my altar and get everything I need together, a day to do the ritual, a day to recover from the ritual and put away everything that wasn’t urgent, and then maybe a day for ritual cooking on the front end. (In a better month, I can do the actual ritual stuff on one day, and depending on how well I’ve been keeping up with cleaning, it may not take a lot of energy.)

Build spiritual practices into things you need to do anyway.

You need to have a bath or shower: build in a cleansing ritual that’s simple. (A handful of sea salt. Essential oils if you can use them. A special cleansing soap you love.) If you have specific physical therapy or stretching exercises you do, try building in some cleansing breaths or focusing breaths before or after, or some other devotional act that works for you. If you need to exercise as part of your management of your health, spend the time listening to podcasts, music, or audio books that are related to your spiritual life.

Collect practices that don’t take much time or energy to do.

I picked up the habit during my training of kissing my hand to the moon. (I see the moon, I give a brief salute by kissing my fingers and lifting them.) It’s easy, quick, and it reminds me where the moon is in the sky and what the phase of the moon is. Other examples might include a brief prayer or line you say to yourself before meals, or before bed. (And I really do mean ‘a sentence or two’ here, not something long and involved. On bad days, my memory extends to about two sentences in the morning.)

Doing something may help you more than doing nothing.

If you don’t have a practice you can do on your worst days, it can be really easy to get out of the habit of checking in with your spiritual life (and feel even harder to pick up when you do feel better in the future.) Doing small things – especially things you set up in advance and use when you need to – can help a lot.

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Practice ideas: set up once, use lots:

Here’s a few ideas for things you set up once, and then don’t have to think about much when you use them. I note that these things *can* be explicitly Pagan if you want, but they also work if you pick things that are personally meaningful to you, but aren’t obviously Pagan to others. (Especially things like a desktop screensaver at work: you can put up great seasonal images, and everyone will just think they’re neat photos.)

Create a playlist or mix CD:
You could do one for seasonal points in the year, for elemental associations, for when you’re in a bad mood, related to ongoing magical workings. I have lots of playlists for different needs (one for each Sabbat, one for each element, one for ongoing magical work, plus others.)

Use images that are meaningful to you.
Set the desktop image of your computer (or your phone background) to something spiritually meaningful to you. You can pick seasonal or elemental images easily without being obviously Pagan, or photos of gorgeous natural places.

Choose computer passwords that reflect a long-term spiritual goal or interest.
This works especially well if your job requires you to change passwords on a regular basis – pick something that’s a focus for the next few months.

Think about things you see all the time:
Choose a mug, print calendar, or other art objects that remind you of your spiritual path or goals. Basically, anything that’s in your line of sight a lot can work for this.

Get some useful things:
Build a collection of essential oils or herbs that you can have on hand (assuming your allergies/other health issues allow) that let you easily make a soothing cup of something warm to drink, or bask in the tub.

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Practice ideas: do periodically:

Some things you can make choices about once, and then it’s easier to include them.

Have jewelry that reflects both large interests and smaller goals.
I have a wide range of pieces – mostly pendants and necklaces – and I try to remember to pick something that suits my mood or my goals for the day. Having a number to choose from makes it easier to just pick something and go.

Most of my pieces aren’t formally charged or imbued with special magical energy – and in fact, I don’t wear a pentacle in public, either. My default ‘religious symbol’ pendant is one with the constellation Ursa Major on it, which is meaningful to me, but not obvious to other people. (Except that I like stars!)

Consider scent:
This is tricky because so many people have scent allergies. However, if you’re not one of them (and you don’t work with people who react badly to scent) it can be a great self-blessing moment, and also a small touchstone throughout your day. I use natural perfumes (see the resources below) and apply very lightly, and I don’t have a problem.

Basic body modification can be very powerful:
Think about both temporary modifications (how you wear your hair, what you wear) or major ones, like tatttoos. I have long hair, and I wear it up almost all the time, except for ritual.

I also have a 10+ year habit of painting my toenails blue as a devotional act. It sounds sort of silly, but it’s the ritual practice I’ve kept up the longest precisely because if I’m having a bad week, I can put off redoing them (or just put a coat over the top to repair chips, rather than stripping the colour and doing all the fiddly bits.) And yet, every time I look at my toes, I have a reminder of what my religious commitments are.

Some traditions have you make and wear a piece of jewelry to anchor a commitment – I’ve used anklets to help me focus on a moderate-term magical working or exploration. If you do this, put a clip on: I found they stay on really well for several months if you choose materials thoughtfully (sturdy beads and embroidery floss work well, with a lobster clasp to join them) but it’s nice to be able to move it to a less visible location or a pocket or remove it if there’s an actual medical need.

Spend time with things that enhance your religious life:
Sometimes reading non-fiction feels like too much work (or can make us feel like we’re ‘bad Pagans’ somehow, because we’re not spending 3 hours a day in devotional activity.)

I read a lot of fiction that makes me think about my religious life, or about ethical choices, or about how I want to live in the world – and there’s a lot of it out there. (everything from Harry Potter to Doctor Who to epic fantasy to far-off-science fiction, or slow character growth over a long mystery series has made me think.)

Food and drink:
If you’re not already doing this, try building one or two seasonal foods into your meals every week or two. It’s a small way to keep track of what’s currently going on in your bit of the world. (Also, tasty). Farmers markets or ‘grown near here’ signs in your supermarket are a good start, but there are also lots of great online resources. (Try a search on ‘seasonal foods’ and your country or region.)

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Practice ideas: groups and events:

Accessibility and Pagan events is sort of outside the scope of this article (see the link up above for more), but I did want to mention a few basics:

Most Pagan events are run by volunteers with small budgets:
They tend to focus on what they see/know. It’s not your job to educate people, but the more you can explain what would help you (and sooner than later) the more people can try and make that happen. Some fixes are really easy, but a lot of fixes are really hard for a volunteer crew to put together in the last week or two before the event.

Not all events will be the right choice for you:
Decide which things matter most to you. This is true for all public events, but especially true if you have to pick and choose. Consider asking more questions before you go, or focusing on events which are particularly good at providing advance information.

Event planners may also have limits and chronic health needs.
Some accessibility choices are mutually exclusive – people who need a service animal and people who are deathly allergic, or people who use scent for pain management or focus, and those who have scent allergies, for example. Some things may have solutions, but may be complicated to arrange at short notice, or require enough effort that they may not be sure it’s worth it for someone expressing only brief curiousity.

(It’s really common for small groups to have maybe 1 or 2  in 10 people who express initial interest continue to show up more than a couple of times – this means it may make sense to have some initial meetings in a more accessible location, rather than move where ritual happens immediately.)

If you’re planning an event, talk to people with extensive experience.
Think about how someone with common needs could participate. A lot of challenges have some relatively simple solutions – if you know to plan for them.

Most important:

Find people who can support you – people who share your condition, or people in the Pagan community who value accessibility or diverse communities. You’ll learn a lot from them, and you can not reinvent the wheel so much.

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Some resources:

  • Etsy.com is a great resource for all sorts of things – from mugs to pins to ritual items to perfume to soap (a soap with sea salt in it makes a great magically cleansing bar.)
  • For natural perfumes, there are a lot of great makers out there. I’ve been a fan of Black Phoenix Alchemy Lab, but there are dozens of others out there (Etsy’s still a good place to start browsing.) Ask questions about ingredients, but it’s often possible to avoid ones you have problems with, and a lot of people react to alcohol fixatives in commercial perfumes rather than the scent itself. (Natural perfumes generally don’t use the alcohol.)
  • For communities to talk about chronic illness issues, there are lots of options out there – check your favourite social networking site, and there’s probably something. (A lot of forums exist for specific conditions: these can be very helpful too.)
  • For talking about Pagan issues and chronic illness, I hang out on The Cauldron, and there’s a subforum for chronic illness discussion with people with a lot of great ideas. (The Cauldron is focused on discussion over fellowship: read the rules and info to see if it might be a good fit for you first.)

[Last edited December 26, 2016]

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