Easy, fast and accurate symptom checker. Enter multiple symptoms in your own words without endless questions. Covers both rare and common conditions.
This site comes recommended by a friend of the blog, and oh boy does it look useful! Since it’s meant for use by doctors as well, the information it will give you doesn’t go through the kinds of “for the patient” filters you’d see on sites like WebMD.
The interface is clean and simple, and once you’ve gotten a list of conditions and selected one to investigate, it opens an on-the-page window for you with the Merck Manual’s entry. There’s in-depth data, a quick-view of the highlights of the condition, and there are even links out to other providers like Mayo Clinic, Medline, WebMD, Google, and more.
What’s particularly nice is that when you’re done looking at one condition, you can click “back to results” to get straight back to the list.
This one seems to do a good job of pulling up the common but quote-unquote rare diseases in the list, which certainly makes it feel a little more trustworthy.
Nonbinary folks, do note that it requires you to enter a binary gender.
Access intimacy is that elusive, hard to describe feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level. Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years. It could also be the way your body relaxes and opens up with someone when all your access needs are being met.
[Image: an abstract painting of brightly red, light blue, and yellow paint drops over a blue background. On one side, the yellow border bleeds over the blue.]
Oh man, this is gonna blow everyone’s minds. Access intimacy is what we feel together as spoonies, or with a trusted friend, or with the person who says something that lets us relax into our disabled selves. It lets us bring down walls we don’t even notice we’re holding up, and extending that kind of intimacy can be such a radical, important gesture.
I couldn’t figure out why small, straightforward tasks on my to-do list felt so impossible. The answer is both more complex and far simpler than I expected.
[Image: a bunch of burnt-down matches standing in a group, on a pink background]
This article honestly changed everything for me. It articulates a number of issues I’ve been dealing with and struggled to explain to both myself and others.
[ETA: This article felt perfect to me at first blush, but as I’ve listened to other folks’ takes on it, it seems that the author took a personal experience and tried to generalize it to our whole generation without mind to class, race, age, and more.
That being said, it still outlines several important phenomenons and can be extremely worthwhile and validating for burned-out spoonies. Have a look!]
Since it’s a long read, I’m going to try to distill it so as to make it more accessible:
There is a type of burnout unrelated to one’s work, but instead all those little tasks one has to do as an adult (”adulting”). Dealing with insurance. Registering to vote. Returning unwanted clothes. Errands, paperwork, you name it. You can be highly motivated and enjoy your work, but when it comes to your to do list, you get this awful paralysis you can’t shake.
We aren’t being lazy when we are paralyzed by tasks on our to do list; there are very specific reasons we’re reacting this way---namely, burnout.
We are trying to “win” the system, even though the system is unwinnable. This, of course, is a bit of a bait-and-switch, since we were told that if we studied hard and went to college we’d be able to have stable careers and a comfortable life with a home, family, 401k, etc.
A lot of us optimize our time and productivity to extremes (which, of course, would be on top of the optimizing spoonies have to do to keep afloat with limited spoons). We believe that if we just optimize right, we’ll finally be able to reach our goals and escape this hell.
Self care is often offered as a way to relieve the burnout, but it tends to just encourage this self-optimization. It’s also a hugely profitable industry.
Many of us are working through and past the burnout because we have to, and that increases our value to corporations, who continue to encourage the same old behaviors and sell us more “self care” strategies.
What can we do about all this? Well, not much aside from huge social change. But knowing about it and talking about it is half the battle.
Heavy stuff. But hugely important stuff.
❤️, Editor Diane
p.s. Want more sweet, sweet discourse? Try “Life-Hacks of the Poor and Aimless” for some academic real talk that completely dismantles the self care movement and its insidious connections with our toxic society and political climate.
Help Yourself With Your Own Personal Symptom Guide
Why do I feel sick? And how do I fix it?
When you’re in pain or experiencing symptoms of your illness, you can sometimes be a little too distracted to remember what may have caused them, or what you can do to fix them.
Case in point: me, hobbling around with extreme POTS symptoms moaning “what is happening to me?”, having a ding-danged emotional breakdown for over a week until my partner gently suggests it could be one of my neck misalignments.
You know, the things I get every so often, which produce these exact same symptoms. The things I can get chiropractic treatment for.
Oops.
I learned something from that embarrassing moment, and it’s that I absolutely need a guide: a reference document I can break out when I’m confused about a symptom, to remind me what generally causes the symptom and ways I usually go about treating it.
Now I’ve got an Evernote document handy. It tells me my POTS symptoms could be from a missed medication, a misalignment, a GI issue that’s monopolizing my blood supply. And it tells me the things I always forget about that will help (aside from the obvious), like compression, electrolytes, and more.
Do yourself a favor and start this document. Fill it with what comes to mind, and then, the next time you go “D’OH!”, write that shit down!
❤️, Editor Diane
ETA: @KaoticSpoonie reblogged to remind us that you can make friend/family/caregiver-oriented guides like this, plus other clever things like documenting service dog commands.
[Image: A clipboard with pain scale and other forms, with pen hovered over. Credit: Rawpixel]
Find The Right Scale For Your Symptoms
Pain & Symptom Scales Masterpost
Folks, describing your symptoms can be an everloving nightmare—especially when most doctors have nothing but a 1-10 pain scale for you to rate them with.
Instead of (or in addition to!) carrying around a calculator and a thesaurus, try these scales on for size. They aren’t just numbers; they are concepts and words meant to make your experience easier to explain. We’ll also list some great additions to the scales that will help you describe your symptoms way better.
We’ll continue to update this post as more scales show up on our radar, so click here for the latest.
Core Scales
Lots of these can be used for different symptoms than they were intended, so don’t let the name of the scale put you off!
Functional Pain Scale - Talks about how the pain impacts your ability to function; discusses levels of disability.
Stanford Pain Scale (CN: suicide mention) - Includes descriptions of severity, some examples of conditions causing similar pain levels, and impact on life and life experience in chronic cases.
Mankoski Pain Scale - Short and sweet descriptions, based on whether or not the pain can be ignored, how it affects concentration and activities, and what level of medication are needed to manage it.
Global Pain Scale - A short survey on pain levels (current, worst, best, etc.), feelings around the pain, ability to do self care, and activity levels. Produces a number on a scale of 0-100.
McGill Pain Index - A scale from 0-50 that lets you compare the pain you’re experiencing to other conditions (childbirth is in the 30s, while CRPS/RSD is around 47). Link goes to a Google image search, as there’s a lot of different interpretations you can check out.
McGill Pain Questionnaire - Has you select words that best represent and categorize your pain. This questionnaire covers the type of pain, how it moves through your body, and how it makes you feel, among other things. Abbreviated and long version available.
Wong-Baker FACES Pain Rating Scale - That one. Usually considered to be unhelpful, particularly with autistic folks who have trouble recognizing facial expressions---but can be useful if you’re having cognitive trouble.
Hyperbole And A Half Pain Scale (CN: bleeding/body horror) - A parody of the FACES scale that’s both funny and remarkably effective. Has facial expressions with text descriptions (10 is “actively being mauled by a bear”).
Visual Analogue Scale - Rather than numbers, this scale is just a line that lets you visually select where you are on a spectrum. There may be labels and additional ticks/benchmarks along the line to help. This is useful if numbers aren’t really your thing.
Color Scale - Another alternative to numbers, this scale has you select a color from a spectrum ranging from blue (0) to red (10).
Impact of Chronic Pain Scale - Scored assessment based on ways and frequency your chronic pain has impacted you. Click the [View] button at the top to see the assessment after reading instructions.
Make your own! - Making your own scale is always an option, and especially useful if you’ll be tracking your symptoms. Just make sure to write it down so it’s easy to check your work and share with others.
Need something to work with? The Randall pain scale has prompts for a DIY scale here, and @ShadyQuotesForHealthFitness lays out their really great system for different symptom types and experiences here.
Simple Mental Health Pain Scale - A very necessary scale created by a patient, with in-depth descriptions of each level. (via @AutismSerenity)
Fatigue Scale - Simple patient-made scale. Scroll to last item in article for image.
Functional Ability Scale - Made for ME/CFS patients, but good for most chronic fatigue.
Companion Scales
Use these to add another dimension to the information you’re trying to communicate.
Distress level - How much distress is your pain causing? Original post with more thoughts here.
Coping ability - How well are you able to cope with your symptoms? Suggested by @ramblingandpie in response to Distress post.
Discomfort - In response to our Distress post, @mcpeaceteach mentioned that discomfort ought to get its own scale, since it can really, really drive you off the deep end (consider what nausea does to you).
How someone else would rate it - You might consider your pain a 4, but someone else who hasn’t gotten used to its annoying thrumming might rate it a 7. Try phrasing as “for someone else it would be x, but since I’m used to it it’s x.”
NOTE: If your doctor can’t cope with two variables, you might consider doing what @queendeepsigh does and averaging them to come up with a more effective response to the pain scale question.
Add-ons
Try these in addition to a single number on a scale!
What you want to do to deal - @someriverinidaho says “I say what I want to be doing to deal with the pain. Like: ‘it’s a three and I wanna go home,’ or ‘it’s a five I want to be unconscious.’”
How many years you’d trade - Hank Green suggests expressing your pain by how many years you’d trade off of your life to make it stop (via @jenack-jarpad).
Pain subtypes - this patient-authored list includes a few extra-creative ones like industrial pain, “gotta/wanna do that” pain, and “back off” pain.
OLD CARTS, SOCRATES, and PQRST - old mneumonics for describing aspects of pain, but elements may also be used to describe other symptoms.
Caution
From @gods-and-punks:
Remember, at least for my experience in American Emergency Care, always rate your emergency’s pain 7 or higher or you won’t be prioritized. My sister’s concussion almost didn’t get seen because she was so out of it that she said “3″ for pain, even though she was severely concussed.
Related
Words Matter When Talking About Pain With Your Doctor (NPR Shots)
Pain Scale tag
Chronic Pain tag
Dealing with Doctors tag
Sources
15 Pain Scales (And How To Find The Best Pain Scale For You) (PainDoctor)
Responses to Add Distress To Your Pain Scale (Spoonie Living)
[Image: Illustration of a pharmacist using a computer to chat online. Content of image text is related in main post.]
Walgreens FREE 24/7 Pharmacy Chat Line
Y’all, if you have questions about your medication, about interactions, or even a general health question, Walgreens has a free online chat service you can use---customer or not.
The chat service doesn’t require a name and is fully confidential. You’ll first be connected with a pharmacy tech, and if needed you’ll be sent along to a pharmacist.
Just a little resource to have in your back pocket!
Some of the biggest barriers preventing people from filing lawsuits in small claims court are the time and money that it takes to fight what could be a trivial case. But a new, free app promises to let you “sue anyone by pressing a button” and have an AI-powered lawyer fight your case.
Folks, this looks like it could be an incredible resource for disabled folks like us, as well as the many other marginalizations that intersect with disability.
One of the reasons bad folks get away with treating us poorly, and illegally, is that although we can technically sue, we’re too dang broke and tired to even consider it worth our time. This app could change that---or, at the very least, get you out of a parking ticket.
So, tuck it in your pocket. And instead of wearily declining the next time someone says you oughta sue, know that you may have a good ol’ lawyerbot in your court.
It’s not available on Android, but worth borrowing someone’s iPhone to try it out!
