Well, it’s been a little while, hasn’t it? A big part of the reason I’ve been so silent recently has been due to that bastard ME doing its usual bastardy things, just more of them and more frequently. Sigh. I won’t recount each and every thing, since not only would that be boring for you, but it would also take far too many spoons for me to type up. So let’s just leave it at I was being held hostage by ME.
Ok, I will actually tell you about one thing it’s been doing because it’s new and super annoying. Keep in mind that I’ve lived through many winters by now, and this has never happened before. Usually, summer in Los Angeles just about kills me each year, but the winter provides a much-needed break from the oppressive heat. However, this winter I’ve been experiencing something very strange and it’s difficult to even put it into words. It’s like my body is having a lot of trouble adjusting to temperature changes. Say I go to sleep at night (as I usually do) and it gets kinda cold overnight. I actually like things getting cold; it means it’s not hot! But then when I wake up in the morning, the air is cold, the house is cold, so I bundle up and turn the heat on. But then as I’m bundled up, I start to sweat, as if I’ve overdone it and now I’m too hot, only I still feel cold. Then I’ll start sweating more, which does its job and starts cooling me off, so I feel even colder, so I pile on more clothes and heat, then I sweat more, and I get colder… and the cycle continues until I’m a tearful puddle of both ice and fire, shivering in front of the radiator, stripped down of as many clothes as I can bear, waiting painfully for my body to just figure it out. Which might take an hour or two for it to do, and by then I’ve used up more than all my spoons for the day and it’s barely breakfast time.
It seems to be more of an issue when I’m stressed (thank you, Geoff, for pointing this out!) so staying calm helps, but you all know how easy it is to simply stay completely peaceful every single second of the day. If we don’t let it get SO cold at night, that also seems to help, and if I force myself to warm up and cool down more slowly, those things help too. But it’s just one more obnoxious way the ME toys with me and makes life more difficult. ME, you’re a sadistic bitch.
Some time soon I will also tell you about FINALLY having another round of nerve-blocking injections after months and months of fighting with my insurance company over them and the recent developments in Calantha’s growth removals, but I’m not ready to get into any of that right now. So, on with the show!
This is the time of the year when I usually remind you guys of all the things I sell which would make excellent holiday gifts for whomever you have on your list, so I’ll keep to that tradition!
Of course, there are my fine art prints, available through my Etsy shop. It’s not at all cost- or time-efficient to list every single image I have available in every size, so if there’s something you’d like and you don’t see it listed, just email me!
Red Bubble is also my printer for my collectable yearly calendars! You can get your 2017 calendar right here 🙂 These are some of my favorite things to produce, as well as some of my most popular items. They’re practical and also give you an inexpensive way to have 12 beautiful images to display on your wall throughout the year; a great value!
I’d also like to mention that I’m really happy with the quality of what Red Bubble makes. I’ve bought numerous items from them over the years, for myself and others, and I’m always very pleased with how they look and function!
Then there’s my self-discovery-through-photograhy-online-course Introspective: A Photographic Quest. It’s still almost 50% off its normal price because I haven’t had time to figure out another hosting option for it yet (Udemy recently decided to cap all its classes at a maximum of $40 per class, regardless of the original cost). Take advantage of that savings while you can! This isn’t a class so much about camera functions, f-stops, shutter speeds, etc (although I provide links which explain those things to those who want to learn). This is truly about exploring who you are as a person and portraying that through art.
The eight-week course gives you weekly prompts of things to photograph; it’s more like visual journaling than simply taking photos. You can share the images if you want or keep them all to yourself, the choice is yours! I built the class based on my experience with the incredible healing power of art and self portraits when I first picked up a camera; this class is completely unique and would make a wonderful gift for anyone who enjoys art and/or self reflection!
And something new this year; I’ve also selling high-quality skin serum through my other Etsy shop! This is a skin serum I developed while searching for the perfect serum for my own face. I couldn’t find what I wanted anywhere, so I took matters into my own hands and made my own blend of oils! Once I saw the wonderful results it gave me, I started giving it to friends for them to test and they also reported excellent results. After many glowing reviews from friends and friends-of-friends, I decided to start offering it to everyone!
My serum is blended with high-quality, natural ingredients (no fragrances or fillers). It’s 100 % vegan and cruelty-free and it is safe for all types of skin. Each bottle is hand-made in small batches and infused with eternally loving unicorn energies!
Right now I’m offering two different versions, one for your face and one for your hands and nails, but the base of both blends are the same. They contain rosehip seed oil (high in fatty acids, vitamins A and C, it helps to regenerate skin and stimulates cellular membrane and tissue regeneration), argan oil (an extremely healing oil overflowing with vitamins A and E and anti-oxidants, along with omega-6 fatty acids and linolec acid which helps ease inflammation while deeply moisturizing the skin) and vegan squalene oil (one of the most effective and powerful moisturizing ingredients currently known! Because it mimics the body’s own natural moisturizers, it can penetrate the skin well and is absorbed quickly.) And you also have the option of adding vitamin C serum to your oil blend (reduces signs of aging and is especially wonderful for eliminating sun spots or other skin discolorations. This vitamin C serum has an infusion of enriched organic aloe and jojoba oils to provide additional healing and hydration for your skin. These unleash powerful antioxidants while preventing the formation of free radicals which contribute to signs of aging.)
Here we are at May 12th again. Another Invisible Illness Day come to bring awareness to all the illnesses and diseases which are impolite enough to leave their sufferers still appearing to be well. Of course, anyone more than casually acquainted with someone who has fibromyalgia, myalgic encephalomyelitis, chronic fatigue syndrome, complex regional pain disorder, multiple sclerosis, rheumatoid arthritis, Crohn’s disease, Lyme, lupus and many, many more illnesses can attest to how debilitating they can be. The facade of health they leave intact feels like salt in the wound; a confusion for those untouched by their cruel hand, a silent undermining force with us at every doctor’s appointment, a declaration that we are lying or greatly exaggerating our illness.
What else can I say about ME? About all the other forgotten, ignored diseases swept under the rug of modern medicine? Illnesses which embarrass our doctors with their constant reminder that we remain unhealed. Sicknesses with confusing, confounding symptoms which can morph and change like the whim of a butterfly’s flight. Maddening maladies which suck away our vitality, our joys, our passions, our lives as completely as any vampire.
I’ve written about ME extensively as it’s been an enormous part of my life for the last eight years. How I have not had a single day since late May of 2008 that was free of pain or its constant, overwhelming exhaustion. How it has progressively gotten worse each year. How the government would like to pretend we invisibly ill don’t exist. How grotesquely underfunded our research is, giving us the same amount of money for research as hayfever gets and less than 1/4 of what male pattern baldness receives. You have heard me spout the facts and statistics. You’ve heard me talk about my personal story and fight with ME. What else can I say?
I can say this: I am not beaten. I have not given up.
I am determined to get better. I am committing myself to be well, even if I have it about through sheer mental will. I will not give in to ME’s gloomy, hopeless future forecast of progressively worsening every year. I am not accepting a future of the living death that is ME.
I don’t know exactly how I will get better, but I am going to. As a sign of my determination, I changed my blog’s tagline for the first time since I started this blog years ago. “Art, photography, life and why I always feel like shit,” felt perfectly appropriate at the time. “Art, photography, life and how those are really all the same thing,” is much more appropriate now. My identity is not Sarah-who-has-ME. I am just Sarah.
As I wrote about in my last entry, my life has been pleasantly consumed recently by my spirituality. I have strongly felt how focusing on fighting ME has been feeding it. So now, I will ignore it as much as possible. I do not mean that I will forget my body’s current limits, or not honor them. Listening to my body and what it’s able to do is vital for my current and future wellbeing. But I’ve realized that I can live within the confines of my case of ME while still not letting it reign in every area of my life, and that feel incredibly freeing. This is the path I will pursue.
This also does not mean that I will not advocate for ME sufferers. I still feel very strongly that the only way we will bring about change is by demanding it. And we can only demand it if we know that it exists in the first place. But I can also advocate without allowing ME to rule every part of my soul.
As May 12th approached, I wanted to create a new image for my Enchanted Sleep series, which is all about living with ME. I asked Katie Johnson, frequent model and collaborator as well as dear friend, if she would help me bring some concepts to life and she gladly agreed to help. Through a variety of factors, I wasn’t able to shoot these images until very recently, which meant I had a very short window to edit one up and release it for Invisible Illness Day, but I got it done! Ideally, I would be releasing the whole short series we shot, but I am content with having just one to show you and help illustrate life with ME. With that, please let me present my latest image to you, Living With The Tombstones.
I probably don’t have to explain the symbolism behind shooting this image in a graveyard. ME (and many other invisible illnesses) truly can be a living, nightmarish death. Even if you’re not one of the unfortunate souls cursed with severe ME, where any touch, light or sound cannot be tolerated, you die every day to the dreams and hopes you had when you were healthy. You might discover new passions to pursue within ME’s confines, but do you ever truly forget what’s been taken from you? If you do, I am not there yet.
I took the name “invisible illness” and interpreted it quite literally, editing out any part of Katie’s body which showed outside her long, princess-like dress. And the mirrored mask felt like the perfect touch. When people look at us, they rarely see us; they see their projections of who we are. Often what they see says far more about them than us. Some will look at me and, because I can occasionally manage to put on clothes, have Geoff drive and go with him to the grocery store, refuse to believe there could be anything physically wrong with me. They don’t see the toll that those short, simple trips take on me. They don’t know that grocery shopping is my ENTIRE plan for that day, probably several days. How the lights and noise and bustle inside the stores give me migraines, panic attacks and leave me in bed for the rest of the weekend. They don’t see the weight of my illness on Geoff and my family. How if I see friends, they always have to come to me. I so often feel like a dead-weight wife, daughter and friend. The times I’m overwhelmed by the ME and can’t decide between crying and being too tired to cry. How many pills I take every day to try and make it to the next day and not be consumed by the constant pain I’m in. They just see a fairly normal-looking girl.
I can’t blame other people for not knowing that I’m sick. I don’t display the characteristic signals of someone who is unwell, so of course people assume I’m healthy. But we need to get to a place where I could tell a stranger that I have ME and they might know what I’m talking about. That if someone else said they have MS or Crohn’s or fibro, that stranger would have heard of those illnesses. That the stranger would have at least a basic idea of our struggle and the dire need for change, for research, for treatments, cures and basic respect.
We can get there. We will. One May 12th at a time.
Join in the #MillionsMissing protests in Washington DC and other locations through the world on May 25. You can participate even if you’re too unwell to join in person or if there isn’t a protest near you!
Start a discussion, link to articles, blogs, videos and/or artwork that discusses ME or other invisible illnesses that will help spread awareness. Add a #may12th hashtag to your posts!
Watch and share the video below which I made last year:
I’d like to thank everyone in my life, online and off, who has supported me during these trying past eight years. Especially Geoff, who I’d only been dating for a month when I became ill. Lesser men would have run from what he had to face, but he’s stuck with me, no matter how bad things get. And I’d also like to thank everyone for the extremely warm and receptive response you all had to my previous blog post. Your kind words and love and support are greatly appreciated, now and always! ❤
I’m so happy so many of you have joined in my print giveaway! There is still time for you to enter, which is free and easy to do! Scroll down below for details, but most of the ways you enter are simply by sharing/retweeting messages onto various social media outlets – all of which are now embedded in this post! Just head down to the very end and you’ll see all the different ways you can participate without even leaving this page!
If you missed my last post, let me summarize it for you. Today, May 12th is Invisible Illness Day; a day we dedicate to raising awareness about illnesses and diseases which can be deadly and have devastating consequences, yet show little to no outward sign. Every single person with any of these illnesses, such as fibromyalgia, Chronic Fatigue Syndrome, rheumatoid arthritis, Lyme disease, lupus, multiple sclerosis and Crohn’s Disease, (and, of course, myalgic encephalomyelitis, or ME, which I have*) has been told at least once, “But you don’t look sick.” As if that invalidates our decades of suffering. Oh, I’m sorry I didn’t meet your criteria of what a “chronically ill” person looks like; you’re right, I’m 100% fine! In fact, I’m going to go complete a decathlon, now that I know I’m healthy.
Ok, so clearly simply not appearing outwardly sick doesn’t mean we aren’t ill. In fact, most people who saw me on the street would probably assume I was a perfectly healthy girl; although one who doesn’t put a lot of effort into her appearance. The reality is that I am partially house-bound, I can only drive short distances on very good days, almost all “out of the house” errands have to be done on weekends when Geoff can drive and help me, I’m in constant pain and exhausted every single second of my life. My energy reserves are very low and I have nothing extra to spare on “getting pretty” before I go out. As long as I’m wearing actual clothes (you have no idea how many times I’ve almost left my house without key clothing items), that’s enough for me. Shove on a hat so I don’t have to address my naturally curly hair and I’m good!
While I never overly cared about what I looked like in public, I do find myself missing wearing pretty things. I put far, far more thought and effort into picking out my pajama outfits that my regular clothes outfits. I’ve accrued quite a collection of PJs at this point, so I can at least feel like those are cute and colorful.
While worrying about one’s physical appearance would seem pretty far down on the priority list of someone with a neurological disease with no cure, and it is for me most of the time, it’s a little more than that. It’s just one more tiny slice of normal life that chronic illness takes away from you; one more reason for you to resent it. I don’t actually want to wear the dresses getting dusty in my closet, I want the option to choose to wear them. That make seem like a small difference, but from this side, it feels big.
While I don’t feel like I can spare the energy for looking beautiful most of the time, beauty is still deeply important to me, and it’s important that I leave the world with more beauty in it than I found it. It’s like when you go camping with your dad; the camp site is going to be cleaner when you leave than when you got there (or at least, that’s how it was with me dad ;)). I’ve come to realize that beauty is a big part of why I’m so drawn to art and to create; it’s a very tangible way of leaving the world a little more beautiful. And in this case, it’s taking the hideous ugliness of disease and transmuting it into something lovely.
With that in mind, I want to introduce my latest image to you; the one I will be giving away a 10″ x 15″ print of on May 29th!
I spoke to you a bit in my last post about why this image is so special… and I’m going that a little bit again 🙂 For one thing, this is a DreamWorld and Enchanted Sleep crossover piece; the first image of mine which belongs equally to both worlds. It spoke to me on both levels, and when I was torn about which series to include it in, I finally decided I didn’t HAVE to choose and it could live in both. Because, while in some ways, DreamWorld is a bit of escapism and fantasy for me, it is not all sunshine and rainbows. Not many of its dark characters have been photographed yet, but they will be introduced over time. Even with their benevolent protectors, their King and Queen, the creatures in DreamWorld still have problems.
At the same time, it helps me to look at ME through the lens of myth and fantasy. Viewing it as a dragon to be slain, a mountain to climb, a thorn in my side to bear; they all help me live with the reality of ME a little more easily.
I have long felt a connection between the stories of Sleeping Beauty and my experience with ME. A poison, an enchanted sleep (giving birth to my photo series’ title), hope of an awakening under the right conditions… there is a great deal of overlap. With that said, let me show you the new image!
Now, this file ended up being a composite of… I don’t even know how many images. A LOT. To give you an idea of the huge scale of the piece, here it is with a normal, full-sized image from another shoot with Katie on top of it.
So, just roughly eyeballing it, I’d say this is, what, 5-6 times the size of an average image? And while my camera doesn’t produce the HUGEST files imaginable, this is still pretty darn big. It was such an enormous file, I had to wait until I’d upgraded my laptop before I could actually work on it. Any time I tried to edit it on my old laptop, it would crash my whole computer after about 10 minutes of work. With my new laptop, it only crashes every few days, and usually only crashes Photoshop, instead of my entire system. Much better 🙂 All said, this took almost two years from start to finish. I’d pick it up, do a little work, get overwhelmed and put it back down. Then I decided it had to be done in time for the giveaway, so that gave me the motivation to finish it up.
Katie really endured a lot for this shot, poor thing. The area I shot it in was a naturally ivy-covered area of my old yard… and unfortunately also FULL of spiders and spider webs.
I’d made a homemade spider repellent (nothing which would harm them, just something with tea tree oil to make the area less appealing to a few days) and sprayed it liberally around the shooting area in the days leading up to the shoot.
But despite it, it was a pretty intimidating place to ask any sane girl to lay down in, relax, close her eyes and pretend to be asleep. I promised Katie that I would watch for any spiders actually crawling on her and scoot them off. I promised no harm would come to her, and, bless her, she trusted me.
Now despite it being just covered in cobwebs and spiders, I ended up having to add all the cobwebs in Photoshop. I downloaded a special Photoshop bundle of brushes shaped like cobwebs, which got me started. It took a ton of manipulation of each little bunch to make it look like it way laying naturally over the different areas, adding light and shading to blend it in to the environment.
After I got Katie situated, I climbed up on a ladder and started shooting. But I quickly realized that the ladder wasn’t tall enough to get the framing I wanted, which led to shooting about a million individual frames which I pieced together in Photoshop, which is why it’s such a huge file. There were some challenges in making everything align since I wasn’t using a tripod, but it helped that Katie had trusted me so completely and was lying perfectly still.
I had also shot a purple smoke bomb pouring out of the bottle (separately from Katie, I didn’t think that would be good for her to breath) but then that ended up not really looking right either, leading to another element I had to create in Photoshop.
I always try to do as much work in camera as possible, but sometimes the real world just doesn’t accommodate you!
Katie’s bravery and willingness to do whatever it took to get “the shot” made me create this virtual plaque for her:
Thank you, Katie 🙂 This image would not exist without you. It’s one of my very favorite images and I’m SO happy we went through all the difficulties of making it, even though I wanted to tear my hair out at times!
Another thing about this image that’s special is that it will be the first to be printed on my new, museum-quality paper of choice: Hahnemuhle pearl paper. You really have to see it to believe it. It is a thick, luscious paper with a bit of texture to it, similar to watercolor paper. What pushed me over the edge into switching to this paper though, is the very subtle, pearlescent shimmer built into the paper. It is magic. And it compliments the ethereal nature of my work so well, it seemed we were made for each other.
And did I mention that this special new print is a $400 value?
Would you like to win this very special print for yourself? Instructions are below! If you already saw my first post, skip on to the info about how to enter, if not, please consider taking a moment to read it and see why I’m so passionate about promoting May 12th and my giveaway!
I would like to say that I spent a great deal of reflection on coming up with the idea of my bed being my kingdom, but it was more of a response to thinking, “Shit, I have this video… now I need a name for it…” But I think it holds true despite it’s spur-of-the-moment conception.
When you spend the vast majority of your time inside your house, it becomes your entire world. If, on a good day, I take Calantha for a walk around the block, I feel like a Viking setting off to explore new lands (but not planning on Blood Eagle-ing anyone). If my house is my world, my bedroom is my home, and my bed becomes my kingdom.
Though it is a queen-sized kingdom, it is a kingdom nonetheless. This is where I am most myself, most honest, most raw, most pure. I spend most of my time here, in my PJs, hair a mess and no makeup (because who’s going to see it, I don’t feel like putting it on, and I especially don’t feel like washing it off). This room is most set up for my comfort and is bent to my will. Why is there such a huge pile of stuff always on my nightstand, or next to my side of the bed? Because then I can reach it easily, no matter what state I’m in. Geoff’s side is spick and span, while mine is a crazy jungle, but that’s how it has to be. In this whole world of things which cause us pain and discomfort, we need there to be someplace that is designed for us. That is, usually, our beds. And in my bed, I rule.
Some people are surprised to learn I have a chronic illness, especially one which confines me to my house and bed so much, since I seem to produce a lot of art. It’s all the result of verycareful planning of everything. I keep my shoots very short and I plan several concepts I can shoot one right after the other while I have my model. My shoot is usually the only major thing I have planned for the week. Actually, it’s usually the only major thing I have planned that month. If we’re driving to a location, my model will usually drive us since I’m often feeling too tired. I try to bang out as many concepts as I possibly can, then I crash. Usually the next two or three days will be awful, and I will pay dearly for my shoot. But after that starts to wear off, I can sort through my images and work on editing them… which is only possible because I can do that with my laptop while lying in bed. If I had to sit at a desk, I could not be a photographer.
Using my laptop and my Wacom tablet, I can create art again. There was a while as I was getting sick where I was truly terrified that art would be taken away from me. In one sense, that did happen, since I had to put away the pencils and paintbrushes which became too painful to wield, but art abhors a vacuum as much as nature does, and photography quickly sprang up in its place, with help from my photographer husband.
Photography has given me a voice. But it’s more than that. It’s given a voice to all of us who suffer from these invisible illnesses. When I started shooting the images which would become a part of my Enchanted Sleep series, portraying what life with ME is like, I never dreamed that other people with illnesses would flock to it like they have. I unintentionally tapped into an underserved community, and those within it have made their approval loudly known. I didn’t set out to capture anything but my own experiences, but in doing so, I captured all of ours.
ME alone effects millions across the globe. There are millions and millions more who bear other invisible illnesses, and you might have no idea that they carry these with them everywhere they go. Most likely, you know someone with one of these illnesses, though it might be undiagnosed. Most of the invisible illnesses tend to be diagnoses of exclusion; meaning there’s no one test for this disease, so you have to rule out EVERYTHING else that it could be before you decide what it is. It’s a long, grueling process, and not everyone really wants to know what’s wrong with them anyway. For me, I couldn’t stand not knowing.
Your aunt who often complains of pain? Your friend who frequently has to cancel plans? Your sibling who gets migraines which always come at the worst times? They may have one of these diseases.
The online chronic illness community (spoonies, we call ourselves) is extremely supportive, but we need to have healthy people on our side too. We need real changes to be made in the world, and frankly, we are too ill to do it all on our own.
These are not diseases which merely dampen our fun or mildly cramp our style, these are diseases which kill. Sometimes that death is a suicide, as the patients cannot stand the suffering any longer. Even if left to more “natural” courses, these illnesses are evil thieves and rob us of years. They take away our livelihood, our joys, our passions and, eventually, our lives.
Here’s how this giveaway works. It’s going to be very easy and there are quite a lot of ways for you to enter!
First thing: subscribe to my blog if you haven’t already. There’s a button in the upper right-hand section of the screen for you to enter your email address (which you may do safely, without fear of spamming or other annoyances). Do that, then move on to step two:
You have your choice here! You can either:
Retweet the facts I’ve tweeted about ME (these are embedded at the bottom of this post to make things super easy – you can like or retweet it without even leaving this page!)
(The Facebook and Instagram posts and tweets are all embedded at the bottom of this post to make things super easy – you can like, retweet or share it without even leaving this page!)
Like and re-blog this post if you’re a WordPress user
You can do all of those, too! One note, if you choose to retweet any of my tweets, each new retweet will count as an entry. I’ve given you quite a lot to choose from, mainly because I couldn’t narrow it down myself any more! 😉 So, for example, if you retweet all 11 tweets, that will count as 11 entries for you. However, if you retweet the same tweet more than once, that does NOT count at as extra entry. The maximum possible Twitter-related entries you can get is 11. The same idea goes for the other social networking sites too. If you share my Facebook post, that’s an entry. If you share the same post twice (which I’m not sure you can do, but let’s say for argument’s sake that you can), then you still only get one entry.
And lastly, whichever social media platform you decide to use to enter the contest from, you must like/follow me there (and here on the blog) for the entry to count!
Now, those are all very important ways for you to enter the contest to win a gorgeous print for yourself. A large part of why the entries are based in social media is to help raise more awareness about ME (and other invisible illnesses) by word of mouth. However, there is another way you can get more entries for yourself.
Any purchases on ANY of the items I sell from today, May 4th, through midnight, PST, May 27th will count as entries! This means that EACH INDIVIDUAL ITEM that you buy counts as its own entry. If you buy five t-shirts from my Red Bubble shop, that’s five extra entries for you!
And on top of the purchases going toward extra entries for you, 25 PERCENT of ALL PROFITS on ALL ITEMS purchased will be donated to theMicrobe Discovery Project! The Microbe Discovery project is a wonderful organization here in the US actively looking for a cause and cure for ME. I strongly believe in what they do, which is why I have chosen them to benefit from my sales.
It’s a very win-win situation! You get to buy whatever it is that you’ve had your eye on, you get extra entries into the print giveaway and ME research is supported at the same time!
On May 29th, I will randomly pick one winner from all the entries and that person will receive the print! It will be signed and numbered and shipped to wherever you live, even if it’s the other side of the world! 🙂
One last note about purchases, if you make a purchase, please leave a comment here on the blog and tell me what you purchased and where it was from. Some of the sites I sell through hide the buyer’s info from me, so I won’t always be able to tell who bought what. I want to make sure your purchases are properly accounted for!
Prices are the same regardless of where you buy, so there’s no need to worry about having “hiked-up gallery prices” 🙂 My Etsy shop also has a few pieces of “wearable art,” some of which is inspired by DreamWorld characters and some of which was inspired by The Last Unicorn! There’s also a whole section of ME-inspired images from my Enchanted Sleep series!
Through my Red Bubble shop I sell all of the following items with my images on them:
Aly took and sent me this lovely shot of her carrying her tote bag! It was a bit strange at first to see my friend carrying a bag with my face in it 😉 We we both quite thrilled with the quality and according to Aly, it’s been getting tons of compliments and the straps are the perfect length!
INTROSPECTIVE is much more about self-discovery than it is about knowing what f-stops are or having fancy equipment. You don’t even have to have an actual camera; your phone will do perfectly well! The course emphasizes self portraits as a way to get to know yourself better, but the definition of “self portrait” here is quite loose. You never have to appear in an image unless you really want to. What I mean by “self portrait” in this case is simply any photograph which shows me something about who you are as a person!
This is a very relaxed, reflective class. There are no grades and no wrong answers! For eight weeks, you will receive a new theme each week and your assignment will be to create an image around that theme which reflects you. Love, joy and fears, for example, are all things you would be asked to create around.
This class is very unique! I modeled it after my own journey of self-discovery as I started taking self portraits. The art therapy was so helpful and healing to me that I wanted to give that back to the world in some way, so I createdINTROSPECTIVE!
And as an extra bonus, here’s a special coupon code for INTROSPECTIVE! Use the code May12ME25 to take 25 percent off the cost of the course! Now that’s a win-win-win!!
I know you guys hear me talk about ME quite a lot, but here’s the thing. It matters. It really, really fucking matters.
There is so much confusion, misunderstanding and so many flat-out lies about ME that we all need to work extra hard to shine the light of truth on it. It’s not all the public’s fault; after all, they’ve been lied to by medical professionals for decades. It all came unraveling in the 80’s when ME’s name was intentionally changed to “Chronic Fatigue Syndrome” and given the belittling nicknames of “the yuppie flu,” “the disease of depressed, menopausal women” and, more recently, “fat, lazy housewife disease,” just so insurance companies could deny patients coverage.
ME does not discriminate. It does not target people by color ,gender, social status or age. It attacks anyone and everyone it can. It destroys lives. It brings promising careers to grinding halts. It is not a way to “get a free ride;” we struggle just to sit up and get out of bed.
It could be your sister. It could be your boyfriend or girlfriend.
It could you.
How many more lives have to be sacrificed on the alter of insurance companies’ desires to not pay out before we get change? How many more patients have to take their own lives in despair? How many more seriously ill patients have to endure the most hateful slurs you can imagine being thrown at them? How many doctors will sigh, roll their eyes and tell us there’s nothing wrong with us psychically, that our problems are all in our heads?
No more.
We cannot let this happen to one more person. Too many have endured this already.
We have the power to make radical changes. We have the power to change society’s view of us, to force the government to give us proper funding, to stop treating us like Cinderella instead of their own daughters. We have the power to unlock the mystery of ME and find a cure. We CAN do this. But we must come together, make our voices heard and DEMAND it. It will never be easily handed to us. Too many huge companies are invested in not spending any money on those with ME. But while history shows us many ugly truths, it also shows us that we, the common people, have great power in our hands to bring about the changes we want.
We just have to ask for it loudly enough.
Please join me in demanding change for patients with ME. Things cannot continue the way they are any longer.
And as you help me advocate for invaluable change in the world, you’ll also be giving yourself a chance to win a gorgeous, fine art print 🙂 Help me with this. And thank you.
[*Because the United States does not officially recognize the name “myalgic encephalomyelitis,” despite decades of public outcry for change and hundreds of thousands signing petitions, they continue to stick to “Chronic Fatigue Syndrome” or “fibromyalgia.” Depending on which doctor of mine you talk to, I may have three different diagnoses. The US is especially complicated in how it defines – or, rather, it’s lack of definition – the differences between the three so it’s impossible to talk about one in the US without talking about all of them. For the record, they are NOT all the same disease, but that is essentially how the US treats them. I know that what I have is ME and not the other two, but many of my doctors had not have heard of ME until I told them about it. ME has scientific, diagnosable guidelines, which I fit, but the country still refuses to adopt the name and its excellent guidelines. If you’re interested in learning more about why this is, here’s an article for you, but for this post, I will leave the subject there.]
May 12th is recognized across the globe as Invisible Illness Day. Though most people are unaware of its significance… which is part of the problem.
It’s a day for bringing more awareness to diseases like fibromyalgia, Chronic Fatigue Syndrome, rheumatoid arthritis, Lyme disease, lupus, multiple sclerosis and Crohn’s Disease, along with many others. Diseases which can have horrific, devastating effects on the person’s life, yet may not outwardly show. They can be completely disabling, and the patient still looks “normal” to the world.
And of course, this list includes myalgic encephalomyelitis, or ME, which I have.*
What ME is –
I’ve spokenquite a lotabout MEon my blog, so a lot of you probably know the basics of it. But for anyone new, here’s a quick summary. ME is a neurological disease defined, in part, by:
Profound fatigue which is unrefreshed by rest and sleep.
Chronic pain, which can occur anywhere in the body, but is especially common in muscles and joints.
Insomnia and other sleep disturbances, despite your constant exhaustion.
Post-exertional malaise (meaning you feel worse after you exert yourself — and the exertion can be as simple as a trip to the grocery store or walking to your mailbox).
Neurological problems, a.k.a. “brain fog.” This can manifest in the form of sudden clumsiness, tripping and falling, being unable to recall a word you knew just a second ago, suddenly forgetting how to read or write, forgetting your name… you get the idea.
Headaches of new or worsening kinds (I never had migraines until ME started sinking its talons into me).
Dysfunctional immune systems (if there’s a cold going around, I will get it).
Hyper-sensitivity to any and all stimuli — I describe it as the volume in my brain being turned up to “11.” Noises are very loud to me, lights are bright, smells overwhelming… the scent sensitivity means that anything artificially fragranced makes me nauseated, but it has led to me find small, unnoticed gas leaks inside houses on several occasions.
Post-Exertional Neuroimmune Exhaustion (your brain functions worse in every way after even minimal efforts — mental or emotional efforts as well, not strictly physical ones).
Low threshold of physical and mental fatigue (lack of stamina) resulting in a substantial reduction in pre-illness activity level — things you did before you were sick are now out of the question.
And so on. Because ME affects every system of the body, in a way somewhat similar to multiple sclerosis, the symptoms can vary from person to person, but these are the classic signposts of the disease.
I have what would be defined as a “moderate” case of ME. A mild case would be someone who could still maintain a somewhat normal life, but would probably need extra recovery time after big events, help lifting heavy objects, etc. Moderate, like what I have, is someone who can’t work a normal job, is partly or completely house-bound, may not be able to drive and has a great deal of their life impacted by the disease. Their world becomes much, much smaller and quieter. Severe cases… you wouldn’t wish them on your worst enemy. These are people who are completely bed-bound, unable to care for themselves in the most basic ways, unable to tolerate any light, sound or touch. They lay in dark rooms in silence, often on morphine drips for their severe pain… and this can last for decades. It’s been described as “a living death,” and for good reason. It’s truly horrifying. This is often the time when patients try to take their own lives.
I would like to say that I spent a great deal of reflection on coming up with the idea of my bed being my kingdom, but it was more of a response to thinking, “Shit, I have this video… now I need a name for it…” But I think it holds true despite it’s spur-of-the-moment conception.
When you spend the vast majority of your time inside your house, it becomes your entire world. If, on a good day, I take Calantha for a walk around the block, I feel like a Viking setting off to explore new lands (but not planning on Blood Eagle-ing anyone). If my house is my world, my bedroom is my home, and my bed becomes my kingdom.
Though it is a queen-sized kingdom, it is a kingdom nonetheless. This is where I am most myself, most honest, most raw, most pure. I spend most of my time here, in my PJs, hair a mess and no makeup (because who’s going to see it, I don’t feel like putting it on, and I especially don’t feel like washing it off). This room is most set up for my comfort and is bent to my will. Why is there such a huge pile of stuff always on my nightstand, or next to my side of the bed? Because then I can reach it easily, no matter what state I’m in. Geoff’s side is spick and span, while mine is a crazy jungle, but that’s how it has to be. In this whole world of things which cause us pain and discomfort, we need there to be someplace that is designed for us. That is, usually, our beds. And in my bed, I rule.
Some people are surprised to learn I have a chronic illness, especially one which confines me to my house and bed so much, since I seem to produce a lot of art. It’s all the result of verycareful planning of everything. I keep my shoots very short and I plan several concepts I can shoot one right after the other while I have my model. My shoot is usually the only major thing I have planned for the week. Actually, it’s usually the only major thing I have planned that month. If we’re driving to a location, my model will usually drive us since I’m often feeling too tired. I try to bang out as many concepts as I possibly can, then I crash. Usually the next two or three days will be awful, and I will pay dearly for my shoot. But after that starts to wear off, I can sort through my images and work on editing them… which is only possible because I can do that with my laptop while lying in bed. If I had to sit at a desk, I could not be a photographer.
Using my laptop and my Wacom tablet, I can create art again. There was a while as I was getting sick where I was truly terrified that art would be taken away from me. In one sense, that did happen, since I had to put away the pencils and paintbrushes which became too painful to wield, but art abhors a vacuum as much as nature does, and photography quickly sprang up in its place, with help from my photographer husband.
Photography has given me a voice. But it’s more than that. It’s given a voice to all of us who suffer from these invisible illnesses. When I started shooting the images which would become a part of my Enchanted Sleep series, portraying what life with ME is like, I never dreamed that other people with illnesses would flock to it like they have. I unintentionally tapped into an underserved community, and those within it have made their approval loudly known. I didn’t set out to capture anything but my own experiences, but in doing so, I captured all of ours.
ME alone effects millions across the globe. There are millions and millions more who bear other invisible illnesses, and you might have no idea that they carry these with them everywhere they go. Most likely, you know someone with one of these illnesses, though it might be undiagnosed. Most of the invisible illnesses tend to be diagnoses of exclusion; meaning there’s no one test for this disease, so you have to rule out EVERYTHING else that it could be before you decide what it is. It’s a long, grueling process, and not everyone really wants to know what’s wrong with them anyway. For me, I couldn’t stand not knowing.
Your aunt who often complains of pain? Your friend who frequently has to cancel plans? Your sibling who gets migraines which always come at the worst times? They may have one of these diseases.
The online chronic illness community (spoonies, we call ourselves) is extremely supportive, but we need to have healthy people on our side too. We need real changes to be made in the world, and frankly, we are too ill to do it all on our own.
These are not diseases which merely dampen our fun or mildly cramp our style, these are diseases which kill. Sometimes that death is a suicide, as the patients cannot stand the suffering any longer. Even if left to more “natural” courses, these illnesses are evil thieves and rob us of years. They take away our livelihood, our joys, our passions and, eventually, our lives.
A DreamWorld/Enchanted Sleep crossover print giveaway!
I try to always do something around May 12 to help bring awareness to ME and its sister diseases. This year, I’m going to be giving away a print of a brand-new image… one which won’t be revealed until May 12th itself. It’s going to be a really, really great image though, I can promise you 🙂
This one will feature model Katie Johnson, and it’s so complicated, I’ve been working on it on and off for about two years. I had to put it aside for a long time until I upgraded my laptop. The file size was SO huge, I could only work on it for about ten minutes before it would crash my entire computer. Obviously, that didn’t work for me. It’s still a monster of a file, but on the new machine it only crashes Photoshop every few days, which is much better..
This image will be very unique in that it straddles both DreamWorld and Enchanted Sleep, a foot in each world like the Pillar of Hercules. No other image of mine does this. It will be a first on several fronts!
Another thing about this image that’s special is that it will be the first to be printed on my new, museum-quality paper of choice: Hahnemuhle pearl paper. You really have to see it to believe it. It is a thick, luscious paper with a bit of texture to it, similar to watercolor paper. What pushed me over the edge into switching to this paper though, is the very subtle, pearlescent shimmer built into the paper. It is magic. And it compliments the ethereal nature of my work so well, it seemed we were made for each other.
Did I mention that this special new print is a $400 value?
Is your interest peaked? Want to win the print for yourself? Instructions are right below. 🙂
Here’s how this giveaway works. It’s going to be very easy and there are quite a lot of ways for you to enter!
First thing: subscribe to my blog if you haven’t already. There’s a button in the upper right-hand section of the screen for you to enter your email address (which you may do safely, without fear of spamming or other annoyances). Do that, then move on to step two:
You have your choice here! You can either:
Retweet the facts I’ve tweeted about ME (these are embedded at the bottom of this post to make things super easy – you can like or retweet it without even leaving this page!)
Like and re-blog this post if you’re a WordPress user
You can do all of those, too! One note, if you choose to retweet any of my tweets, each new retweet will count as an entry. I’ve given you quite a lot to choose from, mainly because I couldn’t narrow it down myself any more! 😉 So, for example, if you retweet all 11 tweets, that will count as 11 entries for you. However, if you retweet the same tweet more than once, that does NOT count at as extra entry. The maximum possible Twitter-related entries you can get is 11. The same idea goes for the other social networking sites too. If you share my Facebook post, that’s an entry. If you share the same post twice (which I’m not sure you can do, but let’s say for argument’s sake that you can), then you still only get one entry.
And lastly, whichever social media platform you decide to use to enter the contest from, you must like/follow me there (and here on the blog) for the entry to count!
Now, those are all very important ways for you to enter the contest to win a gorgeous print for yourself. A large part of why the entries are based in social media is to help raise more awareness about ME (and other invisible illnesses) by word of mouth. However, there is another way you can get more entries for yourself.
Any purchases on ANY of the items I sell from today, May 4th, through midnight, PST, May 27th will count as entries! This means that EACH INDIVIDUAL ITEM that you buy counts as its own entry. If you buy five t-shirts from my Red Bubble shop, that’s five extra entries for you!
And on top of the purchases going toward extra entries for you, 25 PERCENT of ALL PROFITS on ALL ITEMS purchased will be donated to theMicrobe Discovery Project! The Microbe Discovery project is a wonderful organization here in the US actively looking for a cause and cure for ME. I strongly believe in what they do, which is why I have chosen them to benefit from my sales.
It’s a very win-win situation! You get to buy whatever it is that you’ve had your eye on, you get extra entries into the print giveaway and ME research is supported at the same time!
On May 29th, I will randomly pick one winner from all the entries and that person will receive the print! It will be signed and numbered and shipped to wherever you live, even if it’s the other side of the world! 🙂
One last note about purchases, if you make a purchase, please leave a comment here on the blog and tell me what you purchased and where it was from. Some of the sites I sell through hide the buyer’s info from me, so I won’t always be able to tell who bought what. I want to make sure your purchases are properly accounted for!
Prices are the same regardless of where you buy, so there’s no need to worry about having “hiked-up gallery prices” 🙂 My Etsy shop also has a few pieces of “wearable art,” some of which is inspired by DreamWorld characters and some of which was inspired by The Last Unicorn! There’s also a whole section of ME-inspired images from my Enchanted Sleep series!
Through my Red Bubble shop I sell all of the following items with my images on them:
Aly took and sent me this lovely shot of her carrying her tote bag! It was a bit strange at first to see my friend carrying a bag with my face in it 😉 We we both quite thrilled with the quality and according to Aly, it’s been getting tons of compliments and the straps are the perfect length!
INTROSPECTIVE is much more about self-discovery than it is about knowing what f-stops are or having fancy equipment. You don’t even have to have an actual camera; your phone will do perfectly well! The course emphasizes self portraits as a way to get to know yourself better, but the definition of “self portrait” here is quite loose. You never have to appear in an image unless you really want to. What I mean by “self portrait” in this case is simply any photograph which shows me something about who you are as a person!
This is a very relaxed, reflective class. There are no grades and no wrong answers! For eight weeks, you will receive a new theme each week and your assignment will be to create an image around that theme which reflects you. Love, joy and fears, for example, are all things you would be asked to create around.
This class is very unique! I modeled it after my own journey of self-discovery as I started taking self portraits. The art therapy was so helpful and healing to me that I wanted to give that back to the world in some way, so I createdINTROSPECTIVE!
And as an extra bonus, here’s a special coupon code for INTROSPECTIVE! Use the code May12ME25 to take 25 percent off the cost of the course! Now that’s a win-win-win!!
I know you guys hear me talk about ME quite a lot, but here’s the thing. It matters. It really, really fucking matters.
There is so much confusion, misunderstanding and so many flat-out lies about ME that we all need to work extra hard to shine the light of truth on it. It’s not all the public’s fault; after all, they’ve been lied to by medical professionals for decades. It all came unraveling in the 80’s when ME’s name was intentionally changed to “Chronic Fatigue Syndrome” and given the belittling nicknames of “the yuppie flu,” “the disease of depressed, menopausal women” and, more recently, “fat, lazy housewife disease,” just so insurance companies could deny patients coverage.
ME does not discriminate. It does not target people by color ,gender, social status or age. It attacks anyone and everyone it can. It destroys lives. It brings promising careers to grinding halts. It is not a way to “get a free ride;” we struggle just to sit up and get out of bed.
It could be your sister. It could be your boyfriend or girlfriend.
It could you.
How many more lives have to be sacrificed on the alter of insurance companies’ desires to not pay out before we get change? How many more patients have to take their own lives in despair? How many more seriously ill patients have to endure the most hateful slurs you can imagine being thrown at them? How many doctors will sigh, roll their eyes and tell us there’s nothing wrong with us psychically, that our problems are all in our heads?
No more.
We cannot let this happen to one more person. Too many have endured this already.
We have the power to make radical changes. We have the power to change society’s view of us, to force the government to give us proper funding, to stop treating us like Cinderella instead of their own daughters. We have the power to unlock the mystery of ME and find a cure. We CAN do this. But we must come together, make our voices heard and DEMAND it. It will never be easily handed to us. Too many huge companies are invested in not spending any money on those with ME. But while history shows us many ugly truths, it also shows us that we, the common people, have great power in our hands to bring about the changes we want.
We just have to ask for it loudly enough.
Please join me in demanding change for patients with ME. Things cannot continue the way they are any longer.
And as you help me advocate for invaluable change in the world, you’ll also be giving yourself a chance to win a gorgeous, fine art print 🙂 Help me with this. And thank you.
[*Because the United States does not officially recognize the name “myalgic encephalomyelitis,” despite decades of public outcry for change and hundreds of thousands signing petitions, they continue to stick to “Chronic Fatigue Syndrome” or “fibromyalgia.” Depending on which doctor of mine you talk to, I may have three different diagnoses. The US is especially complicated in how it defines – or, rather, it’s lack of definition – the differences between the three so it’s impossible to talk about one in the US without talking about all of them. For the record, they are NOT all the same disease, but that is essentially how the US treats them. I know that what I have is ME and not the other two, but many of my doctors had not have heard of ME until I told them about it. ME has scientific, diagnosable guidelines, which I fit, but the country still refuses to adopt the name and its excellent guidelines. If you’re interested in learning more about why this is, here’s an article for you, but for this post, I will leave the subject there.]
On February 10th, the Institute of Medicine released the findings of a report it had been working on for approximately a year and spent over a million dollars on. Their task: come up with new diagnostic guidelines for patients with myalgic encephalomyalitis/Chronic Fatigue Syndrome and decide on a new, single name to replace both ME and CFS, which are generally used interchangeably for the same disease.* Considering that ME/CFS gets only a pitiful three million dollars in government funding per year (which may sound like a lot, but consider that male pattern baldness, which is not life-threatening, gets $16 million, and you realize how very, very little that is), this is a cost we cannot afford.
The IOM’s findings are so upsetting to me, I can hardly organize my thoughts into rational sentences. But while I may want to sob and punch a hole through the wall (which, let’s face it, I’m probably not strong enough to do anymore), I need to speak up about these incredibly vital points and I need to do so in a way that other people won’t dismiss me as merely a “hysterical woman.”
I’m going to be generous here for a minute; here are the few good things gleaned from the IOM’s 304-page report.
They recommend retiring the trivializing name “Chronic Fatigue Syndrome.” I fully agree with that. I could not agree with that more.
They admit that far more research needs to be done to understand ME/CFS.
They admit that ME/CFS is a real and physical disease.
They recommend that the Department of Health and Human Services should develop new, more accurate ways of diagnosing ME/CFS.
For about half a second, I was happy when I heard the IOM recommended changing the name of “Chronic Fatigue Syndrome” to what they’ve proposed: “Systemic Exertion Intolerance Disease.” Mostly I was happy because I saw the word “disease” instead of “syndrome.” And I will, begrudgingly, admit that their SEID is ever-so-slightly better than CFS. If CFS is a kick in the balls, SEID is a kidney punch. Neither is good, but I suppose if i were given the choice between the two (and I were male) I might choose the kidney punch.
The IOM complained that the name “Chronic Fatigue Syndrome” is demeaning and only focuses on one symptom. Those are both true. They also decided that “myalgic encephalomyalitis” was unsuitable because it also only focused on one symptom. That is not true. “Myalgic encephalomyalitis” literally means “muscle pain and inflammation of the brain.” You have two symptoms being named, both of which are hallmarks of the disease and which have tons and tons of scientific proof backing them up, as well as patients’ own experiences aligning with them. Additionally, more documentation can be found in the UK documentary Voices From The Shadows where multiple autopsies of patients who died from ME/CFS all showed inflammation in the same area of their brains. Despite mountains of evidence to the contrary, the IOM decided that while nearly every person diagnosed with ME/CFS complains of chronic pain, that was not a general symptom for ME/CFS patients, and thus should be excluded from the name.
I know a lot of people with ME/CFS. We are a close community as this disease ravages us in ways only other sufferers can truly understand. We form deep online friendships since we are so often unable to interact with people in meaningful ways in the real world. We rely on each other for advice about treatments and medications, as we almost always know more about our disease than our doctors do. None of my doctors had ever even heard the name “myalgic encephalomyelitis” until I said it to them. We are our own biggest support system. And I do not know a single person with ME/CFS who does not experience chronic pain. Personally, I have not had a pain-free day in over seven years. To have healthy outsiders negate the 2,555+ days of pain I’ve experienced and say it’s not an important symptom is beyond a slap in the face.
But even those slights aside, “Systemic Exertion Intolerance Disease” fails their own test by simply naming only one of our other common symptoms; exertion intolerance.
Exertion intolerance is a very real thing for ME/CFS people. And it doesn’t have to be physical exertion; mental or emotional exertions can leave us just as sick for days, or weeks, sometimes months… or forever, as physical ones. For years and years, doctors have been advising us to exercise our disease away. And for many illnesses, exercise does help. But with ME/CFS, exercise can be absolutely deadly. Push yourself too hard and you can make yourself house-bound or bed-bound… sometimes for the rest of your life.
We walk a knife’s edge every day, trying to judge what we can and cannot do. It’s generally considered a fairly good idea within the ME/CFS community to try and remain as active as you can without overdoing it and making yourself worse. It’s like playing a very stupid game of blackjack with your energy each day. You don’t want to lose any ability to be active that you do have, but even hitting 21.01 could mean a week of being stuck in bed. It’s a serious and deadly game we are forced to play every single day.
So yes, exertion intolerance is a very real and dire threat, but even given that, we’re still left with a name which merely cites one of our symptoms again. And as I said, SEID is ever-so-slightly better than CFS simply because of trading out the word “symptom” with “disease.” Laymen hear “syndrome” and it doesn’t sound serious; replace it with “disease” and their view shifts. I have serious doubts that busy doctors, who have no time to read a 304-page document, will hear anything but “exercise avoidance” in place of “exertion intolerance.” After all, exercise is a cure-all! There’s nothing it doesn’t help! That’s the mantra they’ve been taught again and again and it will take very dramatic events to undo those decades of conditioning.
Almost every ME/CFS sufferer I know has had at least one doctor who refused to believe there was anything physically wrong with them. I had one of those too. Mine decided I was simply depressed and anxious. In a way, she was right; I was getting very depressed because I felt terrible every single day and nothing was helping it, and I was becoming increasingly anxious about my appointments with her because I was sensing she didn’t believe me. I have experienced clinical depression. There was one solid month in a very dark period of my life where I had to rationalize not killing myself every single day. I know what depression looks and feels like. It is a completely different beast than ME/CFS.
It’s like saying sharks and bears are the same threat. Well, no, one lives in the water and generally attacks you if he mistakes you for a seal; the other lives in the woods and might attack you if she thinks you’re a threat to her cubs… You get the picture. Both can kill you, but trying to issue a blanket statement that they are both the same threat, coming from the same place, using the same methods to avoid them would be absurd.
ME/CFS is not “just” depression. I put “just” in quotes because I know how serious depression can be and I never want to be dismissive of it. It kills too. But they are completely separate entities. There is a tendency for people who have ME/CFS to become depressed because they have ME/CFS, but that does not mean they are one and the same. Almost anyone with a chronic, incurable illness is going to get depressed. You never hear people accusing cancer patients that the cancer is all in their heads; they’re just depressed and if they went for a nice jog, everything would be fine!
And lest you think I am fear-mongering and making ME/CFS out to be more than it is, let me remind you of a quote by Dr. Nancy G. Klimas, who specializes in treating both HIV/AIDS patients along with ME/CFS patients. In 2009, she was quoted with the following: “…But I hope you are not saying that C.F.S patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”
The overwhelming majority of ME/CFS patients would have liked to have had our name officially changed to “myalgic encephalomyelitis.” We made our preferences known loudly during the entire time the IOM worked. ME is, after all, what most of the modern world calls it. It was only because of one insidious man that the United States switched to “Chronic Fatigue Syndrome.” And why was such a name invented? To create a legal loophole where insurance companies would be able to deny sufferers coverage. The schism between the United State’s naming of the disease and the rest of the world began with greed from insurance companies. These are your US tax dollars at work.
That brings up another salient point… who are these people chosen by the IOM for this heavy and delicate task, ripe with repercussions which will ripple through the decades? They are 15 people, only seven of whom specialize in ME/CFS in any way. Some are not even doctors. How is this at all ok? How was it allowed that a group of people who don’t have anything to do with the disease at hand would be asked to redefine it?
Let’s give them the benefit of doubt for a moment and assume they’ll really try and do a good job. Who knows. What did they come up with? They decided that to be diagnosed with ME/CFS, you need only three of the following core symptoms:
A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue – which is often profound – of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest.
The worsening of patients’ symptoms after any type of exertion – such as physical, cognitive, or emotional stress – known as post-exertional malaise.
Unrefreshing sleep.
And at least one of the two symptoms is also required:
Cognitive impairment.
The inability to remain upright with symptoms that improve when lying down – known as orthostatic intolerance.
Do you know how many diseases and conditions fall under this umbrella? It’s so broad, it’s utterly useless. You wouldn’t even need to have a physical ailment to qualify for ME/CFS. This is a big deal. If this new standard is adopted, this is the criteria that will be used to find patients to test new drugs and treatments. Can you imagine how murky and confusing the results will be if your patients could potentially have almost any disease? Answers will never be found under these guidelines.
As people online have pointed out, SEID backwards spells DIES. And it’s hard to feel like that isn’t exactly what the IOM, HHS and CDC want us to do. We are an embarrassment to them because they don’t know what our disease is, what causes it or how to fix it… and, of course, a great deal of that confusion was created intentionally; a fact they’re desperate for us to forget. They would rather sweep us under the rug, ignore us, talk over us. And sadly, that is very easy for them to do. With so many patients house- and bed-bound, it’s extremely difficult to show our numbers, organize protests, or object to our treatment in any meaningful ways.
But this is what they haven’t counted on.
When you are backed into a corner by illness, you can either crumple under it or develop a steel core in the deepest part of your soul to bear it. Some days you may flip back and forth between the two, but ultimately, your will strengthens. The stakes are personal to us and they are very high. Though it might take the help of our caretakers or cost us a week of energy or send us back to bed for months, we will not be silenced again. Shifty, snakey policy-makers may have the energy and money we don’t, but they do not have this core to draw on.
Are you pissed off? Good. We need you to be pissed off. We need a public outcry so loud that it simply can’t be ignored. And we need the healthy, compassionate people of the world to join us in demanding change.
Here are some things you can do:
Pass around the image above, Silenced, on your social media platforms. Linking to this post would be helpful! I am giving you permission to use the Silenced image to help get our message across! Put it on Facebook, Twitter, Instagram, Tumblr, Pinterest… wherever you hangout online! The more people who see it and become aware of the problem, the better!
Tweet to @TheIOM, @HHSgov and @CDCgov letting them know your displeasure in the proposed name change. We DO have the power to stop this from becoming our reality! Please use the hashtag #MENotSEID. Not sure what to say? Here are a couple examples you are free to use!
*When you dig into it, no, ME and CFS are not describing the same disease, mainly because the current US diagnostic guidelines for CFS are so sloppy and wide-open. Further information on the subject can be found here, along with countless other places online. Since there is a lot to talk about in this post as is, for brevity’s sake, I’m using the term people are most familiar with, ME/CFS, though the definition I have in mind is the CCC and ICC definition of ME.
**Fibromyalgia is, for the most part, also used interchangeably with ME/CFS in the US. This is not entirely accurate, much like ME and CFS are not really the same thing, but for the sake this post, when I talk about ME or CFS, I am also talking about fibro.
Mythic Pictures 