Spoonies, Yoga, and Chronic Illness/Pain

A few tips on how to make yoga classes and studios more welcoming and inclusive for Spoonies (people suffering from chronic illness/pain).

Pretty much everyone knows what it’s like to get sick. Maybe you’ve had a bad flu. Your whole body aches. You even find it hard to think. It’s a struggle to get up to use the restroom. Going to work or doing anything fun is definitely out of the question. But after a few days, the pain starts to lessen, and your appetite returns. Before you know it, you’re back to work and out to dinner with friends.

Chronic, Degenerative, Invisible, and Unpredictable

But what if you never get better? What if the pain never goes away? What if the fatigue and slow thoughts are always there? That’s what it’s like for many living with chronic illness/pain. For many of them, there aren’t pain-free days. There are just days where the pain is more tolerable and days when you can’t get out of bed. Many of them go to work, take care of their kids, and spend time with friends all while in pain that would keep most able-bodied people in bed. Even a shower often requires resting afterward.

On top of that, many of these illnesses are “invisible.” To the outside observer, they don’t look “sick.” They don’t need that cane or wheelchair, and they definitely don’t need that handicap parking space.

Many of these illnesses are often degenerative too. This means that no matter how “good” they are, no matter how carefully they follow their doctor’s instructions, their illness will continue to progress, continue to take a toll on their body, mind, and spirit. Often taking parts of their lives away and leaving their friends and family to ask why they don’t take better care of themselves.

And maybe the worst part is that is how unpredictable it is. Often, they don’t know from one hour to the next, much less one day to the next, how they’re going to feel or how much pain they’ll be in. “If I stay out with my friends for another hour, will I be able to do the laundry tomorrow?”

Spoonies and the Spoon Theory

People living with chronic illness/pain often refer to themselves as Spoonies. Created by Christine Miserandino, the Spoon Theory provides an analogy to help explain what life is like for those of us living with chronic illness/pain.

One night, a friend of Christine’s looked at her “with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.”

Christine replied,

“The hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home or not to get things done that I want to. I wanted her to feel that frustration. I wanted her to understand that everything everyone else does comes so easy, but for me, it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing.

When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count ‘spoons.’”

It’s not a perfect theory, of course. It doesn’t fully explain every Spoonie’s experience. And a healthy person can never truly understand what it’s like to live with chronic illness/pain. But it’s simplicity allows them to start to gain an appreciation for the different lives we live.

Disease, Sickness, and Illness

If you’ve read this far, you may be asking yourself what the difference is between the closely related terms; illness, sickness, and disease.

The following diagram from the University of Ottawa, “Society, the Individual, and Medicine (SIM) curriculum” notes explains it well.

Support and Isolation

Even when friends and family try to be supportive, they often don’t understand the unique situation of a chronic illness and don’t know how to help. Because, by its very nature, a chronic illness doesn’t go away, they often grow tired and frustrated, not understanding why their Spoonie friend is always canceling plans or staying home.

Think about how isolated you are when you have the flu for a short time. Even when a Spoonie still works and is able to get out to socialize with friends, having a chronic illness can be incredibly isolating. No matter how much you enjoy spending time with your friends, it can be exhausting, often taking a day or two to recover. And having to turn down or cancel plans regularly can take a significant emotional toll. Then if the invitations just stop coming, the loneliness may become overwhelming.

Enter Yoga

Yoga can provide a multitude of benefits to Spoonies. There are the perhaps more well-known physical benefits. It helps reduce pain and increase mobility. It also helps the mind by providing distance from the negative thoughts of things never getting better, feeling like a burden to loved ones, and the abyss of isolation.

It can also provide the Spoonie with a community. It may just be a few ‘regulars’ in class where it’s the only time they don’t have to explain why they’re resting when everyone else is moving. Or it may be a class with your best friend who picks you up and takes you to class every week even if yoga isn’t her thing because she knows it’s yours. This community helps combat the destructive effects of isolation and illness.

Despite these benefits, most yoga teachers don’t know what to do with a Spoonie student. They may know what to do when a student has a pulled muscle or even recovering from surgery. But what do you do with a someone who may be able to do crow one day but can barely do a forward bend the next? What do you think when they’re adding extra vinyasas (flowing pose transitions) one class and then going into child’s pose after the first down dog the next? And why did they stop coming to your gentle flow class and start going to that restorative class instead?

Accessible is Different than Beginner

Many Spoonies don’t feel comfortable going to a traditional class. Even if they do, they don’t usually think to talk to the teacher before. But almost inevitably when they do, the advice the teacher gives them is often to try a beginner class regardless of the Spoonies actual experience with yoga.

Dianne Bondy recently commented to me,

“I feel like when you show up in a nonconforming body, you are never given the benefit of the doubt that you’ll be able to do the class or participate in your own way. Somehow not having what is considered an idealized body is a shortcoming and that needs to stop.”

Advising a Spoonie who isn’t a beginner to go to a beginner class sends several messages. It erases their work and experience with their practice. It says that no matter what they’re able to do, what they’ve been able to learn, it’s not good enough. It tells them that the modifications and adjustments they make in their practice for their bodies mean they’re not real yogis.

Obviously, there’s nothing wrong with being a beginner. Everyone starts as a beginner and beginner classes are a valuable resource for them. There are also Spoonies who will be beginners.

The problem is the assumption that because someone needs modifications or their physical ability varies from day to day that they’re a beginner. That, as Dianne said, they can’t participate in their own way. Instead of empowering the Spoonie to participate in yoga and feel accepted in its community, it says, “You’re not welcome unless you can do it the way I do it.”

An Inclusive Teacher Training Program

My 200-hour teacher training program was very different than any other I was able to find in my area. My teacher was adamant that we were all able to teach anyone who walked into our class regardless of where they were at.

I was nervous about my ability to physically keep up during training and then being able to keep up with the physical demands of teaching even if I did make it through the training. I talked to my teacher about this before signing up for the program. She most definitely did not share my concerns. She just said to honor my body and do what it needed. If I did that, I’d be able to complete the program and teach without any trouble.

The first day of training, still not knowing what to expect and feeling very nervous, I walked into a two hour Ashtanga Vinyasa Yoga Primary Series class with seven other women who had much more stereotypical yoga bodies. I had to modify many of the poses and spend quite some time resting between poses.

Throughout training, I did most of my physical practice in a chair. But I never once felt like I wasn’t an equal participant or that I was a burden on the teacher.

One day, in the middle of the summer, we started training by practicing outside. Knowing that I can’t tolerate the heat at all my teacher brought her kid’s blow up pool and filled it with cold water so I could practice in the pool alongside everyone else. And when one of the other (able-bodied) students got very lightheaded, everyone was glad the pool was there.

The best gift I received from my teacher was the ability and permission to see my limitations as opportunities. And I’ve worked to show my students that in every one of my classes.

Making Classes More Inclusive

When we, as teachers, fail to offer modifications, only offer them as a second thought once we see students struggling, single nonconforming students out in class, or use inappropriate or harmful language (intentionally or not), we risk taking yoga and all it’s wonderful benefits away from that student. They may never return to yoga again or, even worse, may try to push to conform and end up injured.

As teachers, we need to continually be evaluating our knowledge, teachings, and language to serve all our students best. If you’re not comfortable teaching with modifications and props, if you don’t know how to assist a student without making them feel like they’re being singled out, if you’re still using language like “the full expression of the pose,” there are courses and other resources available to help you.

1. Attend an Accessible Yoga trainings and conferences in person.
2. Take Dianne Bondy’s and Amber Karne’s Yoga for All online training.
3. If you know a teacher already doing this work, ask them to come teach a special class at your studio or do a workshop for your teachers.

These steps won’t only help you with Spoonies, it will help you with the vast majority of people who don’t identify with the yoga they see on the magazine covers.

Making Studios More Inclusive

If you’re a studio owner, consider how welcoming (or not) your studio may be. For example:

1. If there are stairs, let people know on your website, in Facebook events, and on printed materials.
2. Have chairs and other props available for every class.
3. Rugs are tripping hazards. Step-on trash cans require balance. Low toilets can be challenging to get up from.

Nothing is going to be perfect for everyone but are there things you can do to make your space more welcoming to more of your students and teachers?

Remember for many Spoonies, even making it to class may be difficult. You can make it easier by creating a community that welcomes them.