By appearance alone, most assume me to fit within the standard of white America: cisgender, heterosexual, Christian, and able-bodied. In fact, I am none of these things. Being non-binary, asexual, Jewish, and disabled have all created a very different lens through which I view and interact with the world, as all of our identities and experiences affect who we are. Today, I want to talk about one aspect of one of these.

One of my (several) disabilities is chronic pain. I was diagnosed with fibromyalgia in 2007, after a severe months-long depression followed by a very difficult pregnancy, emergency abdominal surgery, and then my daughter’s stillbirth, ending in the news that I would not survive another pregnancy. For those who aren’t familiar with fibromyalgia (also called FMS), it’s a constellation of symptoms that includes widespread body pain, extreme fatigue, cognitive difficulties (also called brain fog or “fibro fog”), and unrefreshing sleep, and frequently coexists with irritable bowel syndrome, depression, anxiety, and severe headaches. One of the hallmarks of fibromyalgia is that it can come on suddenly, leave just as suddenly, and can last for hours to months.

According to the National Fibromyalgia Association, approximately 3%-6% of the global population has fibromyalgia, which equates to between ten and twenty million Americans. (Statistically, that’s means between 105-210 Dots have it.) And while fibromyalgia is the most common type of chronic pain, it’s not the only one, as anyone with arthritis, lupus, ME/CFS, or neuralgia, among others, can attest. The Centers for Disease Control says that “in 2016, an estimated 20.4% of U.S. adults had chronic pain and 8.0% of U.S. adults had high-impact chronic pain.” While fibromyalgia can affect all genders and ages, it’s most often diagnosed in those assigned female at birth and between the ages of 20-50.

What do all those statistics really mean? Quite simply, they mean that, as someone who has fibromyalgia, I have the same amount of energy and can-do-it attitude as I had before my diagnosis on some days. And there are other days when walking the fifteen feet or so to the bathroom is both exhausting and excruciating. It sometimes feels like I have a severe road rash on my skin, which can make getting dressed impossible. It often feels like the kind of body aches that come with the flu. It means I can have a Dot connect at 11am, feeling fine, and be stuck in bed by 3pm, unable to attend a Dot meeting.

It also means that I can’t run my business the way most other Dots can. I have to build into my days a significant amount of self-love and self-care: meditation, time in nature, extra sleep, and a special diet. I have to practice pacing, limiting how much energy I put into each day, or I’ll pay for it with a “fibro flare,” the onset of symptoms within 24-72 hours after I overexert myself physically or emotionally. (This is called post-exertional malaise [PEM], and is also a common factor with myalgic encephalomyelitis/chronic fatigue syndrome.)

This is at odds with the “just do it” mentality in modern America. We’re rewarded for always doing our best, for not having excuses, for going out and crushing it, landing the client, closing the sale, leaving mediocrity in the dust. This pins our self-worth on what we do, and how much of it we accomplish. Graded on that scale, I will always fail.

I propose a different scale. Or rather, no scale at all. Our self-worth should be based on who we are, not how much we accomplish. If I’m in a flare, I may be in pain, depressed, exhausted, and the message of “Don’t make excuses! Go out there and conquer the day!” falls flat. More than that, it makes me feel less than like I don’t belong, like I’m broken. I don’t need motivation to go do more, do better as much as I need understanding, compassion, and gentle support to be my true, authentic self, even when I can’t do much more than add love emojis to Polka Dot’s Facebook posts. And I don’t need well-intentioned Dots rushing to sell me their products and services in order to “fix” me.

We reward connecting with each other, and I applaud that, with a caveat. I will never be the person who can have more than about 15 connects in a month, but it’s a Big Deal when I can even have one a week. It may cost me as much energy to do one connect a week as it does for an able-bodied person to do one a day.

Shannon Crotty wrote on the Polka Dot Powerhouse site, “When you are seen, accepted, appreciated, and valued, there is simply nothing you cannot accomplish.” I completely agree. And it may also take me a lot longer to accomplish something that another could do easily.

I may not be able to answer email or messages right away, without feeling like I need to explain myself. When people don’t know I deal with a chronic pain condition day in and day out, they expect a prompt response like they would from any other action-oriented Dot. Today, I’m asking you to consider that the Dot you want to connect with might be one of those 200 or so who copes with invisible pain.

One last thought: While there is no cure for fibromyalgia, I’ve found for myself that these self-care practices (sleep, relaxation, special diet, meditation, nature, pacing, self-love) help manage my flares. I hope that one day I can say I had fibromyalgia. But even then, the lesson it has taught me is that I celebrate and love myself for who I am, not what I can do.

Sheyna Galyan is a published author, psychic medium, and spiritual conduit who helps others connect with their soul guides. According to her family, she’s half-human and half "special." She doesn’t know why they say that; she put her pants on one eyebrow at a time just like everyone else.  Soul Guides LLC