Guest Post by Felix “Da’at” Warren: Chronic Illness and the Spoon Theory

Guest Post by Felix “Da’at” Warren: Chronic Illness and the Spoon Theory November 6, 2014

Recently I was talking to a friend and offhand mentioned that I might not have the spoons for an activity later that night. He asked what I and a few others meant by this ‘spoon’ talk. “Is ‘spoons’ a west coast thing?” Not everyone has read The Spoon Theory, a personal essay on how people with chronic illnesses and conditions have to budget their energy throughout the day because they have a limited amount of it to spend. I linked him to it. His response: “Normal people don’t think like that? They don’t have to meticulously plan everything?”

It’s then that I remembered that not all of us who have chronic illnesses or invisible disabilities know that we’re sick yet. In the mundane community, the afflicted usually explain their symptoms away as laziness, lack of motivation, or some sort of personal failing. After all, what other explanation is there for the simple inability to, well, ‘do the thing’? To do any things? Many of us, like my friend, don’t even realize that ‘normal’ is a state of being able to get up and do things without having to plan out the entire process to ensure we can even handle it. ‘Normal’ is being able to sit up and get out of bed without thirty minutes of mental coaching on why there’s even any point of getting up, without ten extra minutes of eliminating any excuses there are to stay in bed all day. ‘Normal’ is a state of being able to handle a phone call with a stranger without needing to brace yourself for thirty minutes beforehand. ‘Normal’ is sitting around and not being in pain, even lingering, almost undetectable pain.

Most people who have been sick or disabled in some invisible way all their lives don’t understand what normal feels like. They’ve never had a chance to feel normal and it’s possible they never will. It’s difficult to complain about a condition that you assume is just a part of life. I lived most of my life assuming that everyone else was incredibly nervous around people and spent most conversations in a kind of mental terror and anguish. That’s just how social interaction was for me. I figured everyone else was just better at ignoring that stuff and I wasn’t tough enough. I assumed other people were better at convincing themselves to get up and get tasks done, and had no idea that the inability to do so was a sign that I had an illness. I spent almost 30 years of my life feeling terrible – I assumed I was lazy and of weak character.

I also assumed that either the spirit world was to blame, or it had the answers to my mysterious problems. After all, every problem I had could be addressed spiritually in some way. Mood swings of crankiness and rage? I should commune with Eligos, the incredibly calm zen master of a demon I work with. He must have some insight for me on balance and peace. Sudden energy deficit so incredible that I couldn’t do stairs? I needed to ground better. Obviously the energy source I was tied to was dried up and I needed to find a better, stronger energy to tie myself to. My entire body felt awful, like a heavy moldy suit I wanted to just slough off? Time to clean my chakras. I didn’t even entirely believe in chakras, but obviously something was wrong, so it must have been chakras. And when the world truly lurched out from under me, it must be magic. Someone must have been throwing curses at me.

What was it that was cursing me in the end? Bread. I had celiac disease and my gluten intolerance was causing inflammation in my intestines. My intestines had ached all my life. I just never knew what the pain felt like because it was a static I’d tuned out long ago. It turns out that people who are in constant pain are short-tempered and cranky, and the pain flares up any anxiety conditions they might have. Inflamed intestines can barely absorb nutrients, meaning that almost all of the energy from my food was coming from my stomach. Because intestines absorb mostly protein and the stomach absorbs mostly carbs, I had essentially been living on an all-carb diet for years. I won’t get too much deeper into how nutrition works, but carbs give you instant energy that runs out quickly. My energy deficit was a consequence of my diet, not a personal failing, and not a result of poor grounding techniques.

The problem with invisible disabilities and chronic illness is that most of the time, they’re extremely difficult to detect. I wasn’t always anxious, so I didn’t think I had an anxiety disorder. No one sends you a letter saying that you have an anxiety disorder. No one outside of you can look into your head and say “Aha! That’s anxiety. I can tell by the squiggles.” Even entities who are known for being able to look inside people’s heads can’t always tell you what’s really happening. I’ve had demons, angels, and other sorts of spirits examine my mind to help figure out what was wrong with me. But to them it really just did seem like I was upset at nothing, and if they helped try to alleviate my mental anguish, it’d usually come back soon. What were they going to do, look in my intestines? Spirit entities tend to see your spirit, not your weird blobby internal organs.

Of course, because my mundane life was so miserable due to an undiagnosed condition that didn’t even come off as an illness, I invested myself more heavily in my spirit life. It made for an escape, and the answers I found in it were much more satisfying than the non-answers I kept getting in mundanity. It eventually turned into a feedback loop where I’d turn to more and more answers from the spiritual because that was the life where I was actually any sort of success. Unfortunately, that escape wouldn’t last. My spiritual life was slowly twisting and contorting. My discernment was more and more inconsistent, and when I got anxious, it was totally unreliable. I wavered between demanding the entities I work with explain why they weren’t helping like they’d promised, and begging for their understanding because I was such a lazy and unmotivated devotee.

When I quit gluten, and it turned out the culprit was just bread, well… I felt like I had wasted years of my time and the time of the entities that I worked with. I actually had to tear down rebuild a few relationships that had been built during my mental and emotional distress. In the end, we salvaged everything together, and now communication is much clearer. Now they can encourage me and know that their encouragement won’t just fall on a permanently anxious mind that will refuse to hear it.

As for me nowadays, I no longer feel the effects of chronic illness most days out of the year. An accident in a restaurant’s kitchen can bring me back to how I felt several years ago, but now I know how normal feels. Most people don’t know from direct experience what both the chronically ill and the healthy feel like, so I try to use this strange power for good. When friends with chronic conditions deride themselves for not being able to do what are considered basic tasks, I can remind them that ‘normal’ people have what the ill and disabled would consider to be superpowers. I try to help healthy people understand what the sick feel like, how insidious invisible illness can be. And in the process, sometimes I help some people who think they’re healthy figure out that they might have a condition they need to pay attention to.

If you’re in that latter category, if this article or the Spoon Theory has started to ring some bells for you, then you may have a difficult journey ahead of you. I’m not a doctor and I don’t want to write anything here that may be construed as medical advice. I don’t know what your health care situation even is. The best thing to do is to research for yourself what you may have and, if you have a doctor, start seeing if they’re knowledgeable about this part of the medical field. I’ll leave everyone with some resources to help them on their path, whether it’s to find out more about themselves or to understand other people better:

But You Don’t Look Sick – A community and resource blog for people living with chronic illnesses and invisible disabilities.

Invisible Disabilities Association – A nonprofit devoted to help and advocacy for those with invisible illnesses.

American Autoimmune Diseases Association – A national nonprofit health agency focused on autoimmune diseases.

Remember: if you’re leading a spiritual life, it can help you, and it can support you, but it’s important to remember that magic can’t fix everything, and even spirits have limits to what they can do. They can help you more if you understand what’s happening to you. Sometimes the important answers aren’t beyond the veil.

Felix S. Warren is a writer and occultist living in Portland, Oregon. He’s been a witch and a pagan since 1997 and a demonolator since 2001. He co-writes for the blog Merkavah Party Van, where he teaches people how to do magic, summon demons, talk to angels, and work with spirits without getting hurt or making life excessively complicated. His personal blog, where he posts links to useful things and talks about his personal path and his cat, can be found here.

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  • Jaime Jeffer

    Thank you for this article! As someone who has daily chronic pain (fibromyalgia, IBS, neck and back pain) I know what it is to suffer with invisible ailments. Chronic pain runs in my family so I have some great support there, and friends who are supportive. What I’ve found to be the problem are doctors. Since they can’t see it, they don’t treat it as seriously as they might if I had cancer. It’s very hard to build a trusting relationship with a doctor when they aren’t supportive. I can’t work, and so have applied for SSI, been denied and had to endure two hearings in front of a judge. It’s a humiliating experience, especially when I was denied both times. Since they can’t see and therefore cannot gauge my pain, I must not be seriously disabled. Thanks for sharing your story and for the web links…I’ll be checking those out after I post this!