On the Strength of Suffering

On the Strength of Suffering

Hello and welcome! After much thought and resistance, I have decided to start a personal blog for Wildewood Fibers. The name for the blog derives from a post on Instagram that I penned a year ago about the “Spoon Theory” used to describe chronic illness and fatigue.

Truth be told, I don’t particularly like blogs! There has always been a disconnect for me between what is being said and what is actually meant and felt. I find people tend to present only the best parts of themselves online—or their best performance or image or grandstanding. And I can hardly read a blog without noticing the underlying attitude in the language used: performance based, self-centric, combative, hurt, let-me-show-you-how-you-should-feel/act.

It’s hard for me not to pick up on this right away. Hence, I have steered clear for the most part.

To speak about, from, and to suffering is not an easy conversation to have. Least of all on social media. Instagram, where I used to stake most of my online presence and marketing, is not accessible for this. The attention span is short, the content is limited in its ability to dive deeper, and trends come and go. I am not a trend-oriented person. While Instagram is not as fast-paced and trend-oriented as TikTok, it is just not my comfortable way of living. There is a lot to be said for a slower pace of thinking, breathing, and feeling.

For those of us who suffer daily, a steady diet of this type of social media can eat at the cobwebbed corners of our minds as we try to process what our lives could, or should, be like according to the windows we are offered into the lives of others. Much like the old era of celebrity magazines, the images that we are given aren’t necessarily true to actual life.

There is an invisible divide.

It’s hard to find the words to describe the pain, the isolation, the weariness, and the loneliness of a chronic and invisible illness. And in the presence of social media, how do you tackle a topic so complex? So deep, so personal, and experienced by a number more vast than we realize. We are the shadows, silent and waiting, hidden away in homes and in plain sight.

I don’t have any obvious symptoms for people to visually or audibly absorb and pronounce, “Oh, you must be suffering!” It is all invisible, within the cells and mitochondria of my body: the daily deep pain in my legs that no NSAID can touch, the fogginess and fatigue of my mind, and the toll of waking up after a long-fought shallow night of sleep.

I have been contending with these things since I was seven, yet to strip me of my illness and pain would also strip so much meaning from my existence. I do not exist to be hurt or in pain, but in my existence I have known pain, suffering, and darkness. These are vital parts of my being, but not the whole. The wisdom and understanding that I have gained from my experiences are precious.

I have learned to sit with the darkness and pain and welcome them in when they arrive. It is better to spend my energy with acceptance of where I am at, rather than putting that precious resource into fighting my own reality and making my body the very enemy from which I desire to run. There is in this gentle way of approach a beauty that overwhelms the suffering—it assigns it a meaning, and it is no longer a seemingly pointless and endless swamp that I have wandered into. Meaning creates a bearable reality for suffering.

I do not run from my pain, nor do I believe it is for anyone to say “If I could take it all away, I would.” This sentence has always troubled me. It is meant to be comforting, yet on the receiving end, I feel I am being denied an important part of my reality.

I am currently in pain.

This does not mean that it is for anyone else to take away; it is a sign of internal unrest, and it asks me many questions: What was my nutrition intake? Did I have too much of something inflammatory? Am I storing more trauma or stress about something than I realize? Have I pushed myself too hard? Is there a deeper damage beneath the surface that I need to be aware of? What do you need me to listen for, Body? I am listening, and you are not alone.

The care of a sick body, however, regardless how meaningful or welcoming you can be of your circumstances, is wearisome. Some days I feel more tenderhearted toward my circumstances and pain than others, and some days all I want to do is be anywhere outside of myself.

The trouble with Lyme disease is that it is an ancient yet recently discovered disease that has become highly politicized in the medical world. Each medical professional has their idea about how it should be tested and treated (especially the CDC). After seeing over 120 doctors in my lifetime, I can say one thing for certain: the division is tiresome. I have been yelled at for claiming this diagnosis, swept under the rug, spoken over, told it was all in my head, and have tried so many weird and “woo-woo” treatments in hopes of a cure.

I have been on an extreme roller coaster for the last twenty years with false starts and false hopes; unexpected successes and temporary remissions, followed by unfortunate setbacks; and a black hole of medical expenses. Lyme disease treatment is rarely covered by insurance, so for the past eighteen years, my parents have been fronting almost everything out of pocket. I grew up health-poor, so most of their money went into my medical treatment.

What does all of this have to do with Wildewood Fibers? Everything. Everything. When the creator of a brand encounters difficulty, it often becomes part of the brand’s story. On my website’s About page, I speak about Wildewood values. One of them is chronic representation. And due to my illness, I have not been able to have the presence that I was hoping to have to move forward.

But in this blog about suffering and the strength and beauty therein, I hope to bridge that gap a little.

When I first started Wildewood Fibers, I was still recovering from losing a sick organ, and my family was starting from the ground up in a new city where we knew no one. I wanted to hide my illness as much as I could so that I could appear to keep up with the industry and social media and provide as much as I could to my family as fast as I could. O ye of much naïveté!

I have never been a natural in the online world, and what was supposed to be a quick way to reach customers and promote my product turned into a great mental battle. I was still sore from my family losing almost everything a few years prior, and seeing shiny houses and lives that seemed untouched by disaster or suffering on social media ate at me. What was I even doing? Everyone else seemed so put together and successful; seeing some dyers shoot from opening their shop on Etsy to thousands of followers was confusing to me. What was the magic recipe that I wasn’t hitting?

I had dreams, of course—I wanted to buy a house for us and finally be able to breathe without having to rely on my parents. But the reality is quite different. Due to my limitations, this physically demanding job takes a pretty toll on me, and in an oversaturated market, I am not able to keep up or follow up on my ideas quickly enough.

In spite of that, I recognize that in illness, there is an unusual strength. In speaking up about it, I have found the online world is the perfect gathering place for those of us who can’t always physically show up. We may be trying to figure out a way forward with our circumstances, but we’re online, of course.

I could fight these things and be very disappointed, or I could welcome them in, see them for what they are, and create a new path forward for myself (which I usually tend to do). So perhaps this blog is also the acceptance of that: I am quite sick, but I do have life and words left in me yet. Just not for social media. And at my own pace, and in my own fullness of time.

Currently, I am moseying my way into a shop update for fall, hopefully in late August. This body just needs a well-managed pace. :)

For my chronically ill friends: What are some things that you find yourself tripping over that you feel healthy folk don’t experience? Tell me your story. My struggles may not be your struggles, and your struggles may not be mine. But they are worth sharing! I hate the phrase “I don’t suffer like you.” Of course you don’t; you suffer like you. Suffering does not belong to Themis or her scales of justice.

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  • Thank you for posting this and being so open with your experiences of chronic illness! I’m sick & disabled and my mother has Lyme’s disease among many other health issues; it’s hard to describe it briefly without minimizing, but the way Lyme and many other illnesses are treated by the medical community is somewhat reminiscent of how MS was minimized over and over again until they finally had enough “hard evidence” of the disease process from more advanced imaging techniques to validate patient experiences. I have h-EDS and have seen friends told to wait a year for a genetic test that may become available when we have diagnostic criteria available now if doctors would just believe that people tend to know their own bodies. I am so sorry you have had to experience this kind of mistreatment.

    One thing I don’t think able-bodied people fully understand about chronic illness is that even outside of medical bills, it’s extremely expensive in a very everyday way. For me, it means buying specific products and foods that are compatible with my allergic sensitivities and digestive issues, countless over-the-counter medications and medical devices, more accessible alternatives when the other options are much more affordable and I am on a spoons deficit, prescriptions that I cannot stop taking for even one day, and a growing pile of topical pain relievers, massage, accupressure, and traction devices, and a massive pile of sunscreen that doesn’t immediately cause a reaction. Knitting with natural fibers has also been so helpful (if expensive) to me because wearing what I make and layering helps me adapt to my body’s wild thermoregulation.

    Sending spare spoons your way!

    Arlo on
  • 💜 this

    This is such a small thing I feel like healthy people don’t experience or understand but: packing stress. I come with a significant amount of medical equipment, and packing for trips means at least half my luggage space is usually occupied by medical devices, backup devices, and backups to my backups—because what do you do if you’re thousands of miles from home and missing something you need to survive? The possibility of being separated from my luggage gives me such travel anxiety.

    And then, on a larger scale I think most of us spoonies get, just the sheer extra work it takes to stay alive every day. The realization that so many people don’t have to spend energy to continue existing just floors me these days.

    Jenny on

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