I made a comic about what it feels like (to me) to cope with having an invisible illness and the judgements and accusations that sometimes come with invisible illnesses.
I did it in green ‘cause that’s the color of the Celiac Awareness ribbon Celiac is one of the “imaginary” “all in your head” “stupid” “hypochondriac” invisible illnesses I live with.
So here. Be nice to people in general, because it’s the right thing to do, but if you can’t at least do that then please don’t be an asshole when someone tells you that they have Lupus or Celiac or Fibromyalgia or any of the other things that we live with every day that you can’t see on the surface.
it’s the wellnes that i fake not the illness
^^^^THIS. Seriously, this. I could have written this entire comic, with the only substitution being in the description (I have Ehlers-Danlos Syndrome, which has caused all kinds of havoc with my body, chiefly damage to my spine and joints, and ongoing nerve demyelinization which creates issues like trigeminal neuralgia and peripheral neuropathy.)
There is never a day when I’m not in pain. The good days are when I *can* pull myself together enough that it’s not visible to others, and am able to enjoy a relatively normal life — even though I may pay for it later, since many of my favorite activities leave me laid-up in bed for a day or more afterward.
It’s worth it to see and hug my friends, to parent my daughter, to be a partner and a companion and a whole person … but I would trade in every “privilege” that some people assume I have (parking, “getting” to use a wheelchair, medication, attention, “medical drama,” you name it) to have a healthy body and a normal life, and to have the same for my daughter, who also inherited this poorly-understood and incurable disease.
So, yeah. Before you thoughtlessly tell someone that you “wish that YOU didn’t have to work,” keep in mind that the person you’re talking to may have given up a cherished career (me), or may desperately want to finish her education (my daughter, who has had serious and life-threatening cardiac complications from this disease — but you wouldn’t know to look at her, other than her low energy level. She doesn’t *look* like she needs a disabled parking space, either.)
I’ve managed to have as much of a good life as possible, given the limitations of this disease. But if there’s one thing I can accomplish, it’s this — getting people to listen, when I explain that appearances can deceive. If someone says that they have an invisible disability, odds are that their truth is very difficult to live with. Please don’t make it harder by not believing them.
thanks, I sent you a message on DoA since apparently I am no good at tumblr messages.
could you send me another message? Tumblr managed to eat it when I went to reply @.@
So I’ve been trying to sort out what to do here for a while. I have a lot of extra Soom parts I’m not sure what to do with. Those who know me, know I tend to just stick to the fantasy parts, which for Gelert (Chrom) He’s just got big paws and claws and only used his human parts a few times. For Aidara (Galena/Vesuvia/Breccia manticore mix), she’s never used her Breccia hands or lower human leg parts (see: http://icemutt.tumblr.com/image/29914905236 ), and in addition, when Aidara arrived, her shoulder had a pretty big break in the socket. Soom was super sweet and sent me a replacement, but left me with the chest. My thoughts for a long time, if i ever had the extra energy and could be sure of keeping the resin dust under control, was to remove the boobs, carve round indents into the bust, add round backs and hooks to the boobs, and basically make a thing that allowed the boobs to rest in these sockets but also attach to the stringing, allowing for switching between ” in bra” looks and more natural hanging. I have no idea if it would work, but I think it would be entertaining at the least.
But anyways. I have all these extra parts. And I’m not sure what to do. I probably could rehome the Vesuvia heels and toeless feet and I’m sure someone out there is searching for NS heeled feet, which i refuse to let my already difficult Souldoll Zenith girl get her hands on and have an excuse for even more shoes… But the rest of it? What do you do with a bunch of shins and feet? Do you make the legs to a four legged flesh golem and make an apoxy middle to connect it all together? I don’t have my ears pierced, so earrings of hands are out. Anyone got any ideas? Especially the people with even more Soom dolls than me, what do you do??
Rules: Find out what characters share the same personality type as you here and list the characters that you find relevant below.
Then tag five friends and let them know you tagged them!
Those would be your characters, wouldn’t they. XD
But are those increasing intensities of “best character” ?
Any advice for our anon? I’ve thought about it a lot and I don’t know.
H-EDS is also of the habit of expressing differently person to person in a family. I’m the only diagnosed one in my family, with the most obvious dislocations. My mom’s hips pop out, and most of my cousins (maternal line)!can do the W sit, stretch their arms really far behind, and if you look carefully in photos, most of us stand knees hyperextended, a habit I have to consciously correct myself. My maternal grandfather and my sister both have severe GI issues, which can also be a sign, but at least as far as my sister, woman is buff. She has a much stronger muscled build than me and does not display dislocation issues.
H-EDS is a type that so far cannot be pinpointed genetically and must be Dx’d by symptoms.
As a note, it took years for me to get a Dx. I had never heard of EDS until I ended up in a pain management office at 24 with a doctor combing my history and pointing out symptoms and big red flags from really weird issues I had had (MVP and Rheumatic Fever in college, for example). EDS is not always easy to spot without a complete picture, and it’s one that a lot of people end up realizing they have before the doctor.
I had been told (earlier in the year at 24yo) I would “grow out of being so loose”, don’t be too discouraged if you’re pretty sure that EDS is going on but your docs are reluctant to move in that direction.
(mobile version ate my last thought) I think it depends on what specialist you go to see as well. A rheumy typically should know a lot more about EDS but from what I’ve seen on the Inspire EDNF community, my own experience, and my family’s experience, a good rheumy is hard to come by. My best luck so far has been with Pain Management doctors. If you’re believing it’s the H-EDS type (most common) then there’s no genetic test. If it’s not urgent, I’d wait. Folks over at the Inspire EDNF forum could give you some input too, especially for your locality. I’d weigh the options, a genetic test for something that can’t be tested genetically for seems like a waste of money at the moment for me.
I am hoping they’ll have a genetic test soon, though.
E-Nabling the Future is an organization of volunteers who produce 3D-printed prosthetic superhero arms for kids in need.
the wolverine ones…
coolest kid on the playground
So much yes to this. The importance of custom, personalized devices to those who need them regularly is often overlooked. Also, I often feel odd when I see a prothetic that is made to look as normal as possible. Real-looking is cool, but many I have met who need custom limbs and braces tend to have an interest in having a design that both accents their personalities and makes creative use that tends to show instead of hiding their condition.
Plus, frankly, kids love colors and the fact they’ll be growing means custom 3d printed ones could be made as they grow and their personalities change. Plus look at the varieties of needs and personalities just in these photos.
I was tagged by redoctoberrose.
Rules: Find out what characters share the same personality type as you here and list the characters that you find relevant below. Then tag five friends and let them know you tagged them!
If you do not know your Personality Type, take the test here!!
INFJ “The Counselor”
- Guinan from Star Trek: TNG
- Winston Zeddemore from Ghostbusters
- Harold Crick from Stranger than Fiction
- Princess Zelda from The Legend of Zelda
- Coleman from Trading Places
- Shepard Book from Firefly
IceMutt’s not-part-of-meme-notes: I typically over years test as INFJ on longer or more involved MB tests like myersbriggs.org and something that overlaps heavily on the Visual DNA site. On other sites, I vary a lot dependent on the questions being less general (hence why I’m not using the linked short version for myself). I’m always hesitant on putting characters under MB types because of the general rule that the only accurate MB type is from the person themselves taking the test, but as that’s not possible, the characters I chose from the list are all characters I’ve long liked and also I feel show a variety of ways that the particular “personality type” can be expressed.
how the hell do people use black pastels for face ups? as soon as i try it goes everywhere and the whole face up becomes dirty like i rolled it through coal! no other pastel colour seems to do that… what am i doing wrong?
Image by BJDConfessions
If black is the only one doing this, check your pastel itself, or maybe buy another one to compare it with. Black is a heavy pigment, so you’ll have to be careful with it, but if your black is more powdery than your other pastels, that could be affecting it. It’s also one of the only ones I only take directly from the pastel and never scrape off the pigments, even then, I have a designated black pigment brush, i brush it over the pastel, and then gently tap it over my scrap paper or directly over the black pastel so I’m only applying a little at a time. When dealing with strong pigments (black, certain blues, certain reds in my experience) I suggest gloves, possibly several pairs to switch through. You might also put a large cotton ball or tissue INSIDE the head, so that any pigment going through when working around the eyes or an open mouth will catch and not end up falling through onto your hands and on the back of the head (big problem for me).
On the occasions I used black (I’m more a lots of color person, but my cousin wanted darker colors on her girl), I actually started with a few layers of grey, then switched to black. I tend to do this with a lot of colors. My theory is that by adding more than just one flat color, it allows the curve of the eyelid to be shown a little better. I tend to use 3-4 colors on lips in various sections of gradation to make them pop a little better (I also tend not to add lines or the mouth-corner dots).
See if any of that helps?