What I love about the spoonie community is that no one asks you to prove anything. No fellow spoonie has ever asked me for my bona fides as a spoonie. We all understand how exhausting it is to have to constantly explain our physical and mental conditions. Being called on to perpetually justify your needs is insulting and dehumanizing. The term spoonie itself stems from an attempt to dumb it down for the benefit of those who have no experience with the way we need to live.
The default assumption in the ableist world is that you’re just lazy. You could do things if you wanted to. All you need to do is try a little harder. The secondary assumption is that you’re seeking attention, or sympathy, or special treatment. Yeah. Like putting in a ramp is “special treatment” for people that use a wheelchair.
When I talk about my particular issues, it’s not some sort of weird flex. It takes someone with a severe empathy gap to think that people with disabilities are lying, or trying to scam them. My goal is to educate people about the realities of chronic conditions and especially invisible illnesses. The only way to reduce a stigma is to stand up and refuse to be stigmatized.
My Bona Fides with Chronic Pain
I’ve stated before that I’ve been in pain every day of my life for over 40 years. This is the outcome of several different accidents, the first of which happened when I was a teenager. I am “lucky” to have a pronounced limp, so when people see me in motion it’s obvious that something’s off.
Even if it’s not my hip that’s bothering me, people rarely challenge that I’m experiencing some sort of discomfort. More often than not it’s actually my ankle (same leg) or shoulder (same side) that are bugging me. The hip doesn’t really hurt all that often any more; it just doesn’t work right.
My pain is “diagnosed” in that all of the injuries were treated at the time of occurrence. I have received various treatments for chronic pain, including physical therapy, steroids, bioelectric treatments, acupuncture, and massage. At every step I have refused medication, because I never wanted to become addicted to heavy painkillers. Currently I manage pain through diet, moderate exercise, meditation, and over-the-counter painkillers.
My Bona Fides with Mental Health
I have been diagnosed with generalized anxiety disorder (GAD) with accompanying panic disorder. The latter also comes with hypervigilance, which has led some doctors to speculate that I actually have undiagnosed PTSD. The GAD is also responsible for my executive function disorder (EFD), which basically means that when I’m stressed I exhibit symptoms similar to attention deficit hyperactivity disorder (ADHD), which also connects back to the hypervigilance.
The hypervigilance isn’t just an aversion to noises, or a sensitivity to too much stimulation. My brain actively seeks out signs of danger. I constantly scan the area visually. Crowds are hell because there’s too much motion. If it’s 2am and a flat two floors down on the other side of the building has their TV on, my brain strains to hear it more clearly. It’s more than a distraction, because a hypervigilant episode is often a precursor to a full-blown panic attack.
If you’ve never had a panic attack, it feels like you’re dying. That should be all I need to say there. It’s not pleasant.
The EFD is my current daily struggle. It affects working memory, planning, and problem solving. This is why I live out of a bullet journal, and why I consider the journal “base”. When in doubt, look at the list and do the next task. That keeps me moving forward and somewhat focused. I can keep knocking out rote tasks. It doesn’t help with creative work, though.
Diagnosis is a Tool, Not a Sentence
When your car gets a flat, you don’t abandon it and go get a new car. You change the tire. If your car is making a noise or the check engine light comes on, you go to a specialist so they can identify the problem. Then you figure out how to fix it.
That’s the bottom line to my life as a spoonie. If you can’t do this, you can still do that. When you’re not able to do a task this way, then you figure out how to do it that way. No one can do everything, but nearly everyone can do something. It’s just another set of resource limitations, like time and money, that you need to get creative and work around.
I don’t need to prove my bona fides as a spoonie. I do need to understand how my body and mind work, so I can use them as effectively as possible. Knowing that I only have so many spoons to work with in a day, I can plan and prioritize how I use my time.
My Bona Fides as a Spoonie
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About Simplify – Create – Thrive
About Berin Kinsman
Berin Kinsman is a writer, simple living minimalist, and spoonie. By day he works as the owner/publisher at Dancing Lights Press. An American by accident of birth, he currently lives in Finland with his wife, artist Katie Kinsman.