My husband gave me an idea ages ago, and I wanted to actually put it into motion. So today, I give you the ‘Being Visible’ line of shirts.
The goal of Being Visible is to allow people with mental illness, or other invisible illnesses, to help make people aware of their coping abilities on any given day by using the simple image of a battery at various charging levels:
Low charge – low ability to function ‘normally’ or perform daily tasks. May need assistance or frequent breaks Medium charge – diminished, but capable of performing routine or simple tasks during the day. Some assistance may be needed. Full charge – able to perform daily tasks with little to no assistance or reduction in speed, effort, etc. Little to no assistance needed.
These images will be placed front and centre of various T-shirt/tank top designs, to enable wearers to non-verbally alert people around them of their limitations, if they so choose. Of course, as ability levels change, so too can the shirts. On the back of the shirt is the simple text line ‘Being Visible’ above the rod of Asclepius, the common symbol for medicine.
75% of the proceeds will go to the American Foundation for Suicide Prevention. The remaining 25% will go towards my ability to purchase several units of each shirt for my own use.
You can find the shirts at the links listed below. The target goal is 75 units each.
This is going to be a very vulnerable post for me, and not because I’m half naked and showing my face. This is the beginning of a photography series involving chronic illness.
In December of 2015 I was diagnosed with a genetic disorder called Ehlers Danlos Syndrome after a lifetime of health problems that never seemed connected. EDS is a collagen error in my genes meaning my collagen doesn’t form the way it’s meant to. Since collagen is the glue of the body, this means that almost everything can be affected. From Wikipedia, “Collagen provides structure and strength to connective tissue. A defect in collagen can weaken connective tissue in the skin, bones, blood vessels, and organs, resulting in the features of the disorder.” People with EDS often have chronic pain in their joints due to loose ligaments and weak muscles allowing those joints to frequently dislocate. Muscle spasms and nerve pain are also common. The pain involved with EDS is what this set of photos focuses on.
I experience chronic pain every day. I tend to keep it hidden because continually complaining about my pain will only make it harder to handle. It’s not something you can see so I know people, aka my family, have a hard time believing that it’s actually happening, especially when I push through my pain with a smile.
This set of photos is meant to help people visualize the pain I experience that they don’t get to see. It’s meant to bring an understanding that you can never know what someone may be experiencing that you can’t see.
The pink/red spots highlighted on my body are places where I experience pain regularly, most often all at the same time.
(Okay to reblog, please don’t remove the caption, 100% NOT for blogs with raunchy porn or fat fetish/feeder blogs)
thank you for sharing this. you’re brave and beautiful.
having an invisible disability is so frustrating. it’s easy to get mad at the people around me for inadvertently making my life harder, but even when they know intellectually that i have these problems – and even specifically what the problems are – they can’t SEE when i’m having a rough day, they can’t SEE when i’m having a flare-up. some days, if there’s an empty 12-pack box on the kitchen floor, i can easily pick it up and take it out to the recycling bin; some days, i can’t even step over it, and just nudging it aside with my foot makes me wince. it’s not my friends’ and family’s fault they don’t know when i’m hurting. i don’t want to guilt people for that. what i do want them to understand is that the fact my illness is invisible makes it even suckier.
i’ve taken to using my cane in public even when i’m not having a bad mobility day, because people see it and are a little bit more careful around me, so they’re less likely to do something that will give me a bad day. OP, if you don’t use a cane, you might consider starting, even if balance while walking isn’t an issue for you; people bump into you on the sidewalk a whole lot less, and don’t let their dogs jump on you. 😀
September is #pcosawarenessmonth! To see our full post go to our facebook page and read our info on PCOS! It also includes helpful links for those who have it and those who may think they have it!
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#Spoonie #spoonielife #spooniestrong #pcos #polycystic #polycysticovaries #polycysticovariansyndrome #pcos #invisibleillness #chronicillness #chronicpain
Carrie Fisher and Gary – Star Wars: The Force Awakens Premiere at Leicester Square on December 16, 2015 in London.
So, this is important. Carrie Fisher has an invisible illness and disability – severe mental illness – and she’s been really open about it. Open to the point where she has her service animal Gary out on the press tours.
Yeah, a service animal. Not a guide dog, a therapy dog. Fisher has almost died because of her illness – and the reason she could DO Star Wars is because she has accommodations that work for her.
Everyone is talking about how Gary has stolen the show – but he is *important*. He is working. He is what she needs to go out and do this shit.
Next time someone with a disability asks for you to do something simple to accommodate them I want you to think of this. This is Princess Leia and this is her accommodation for her illness.
you know how when you drive your car into mud, you can rev the engine and switch gears and jam the pedals all you like, but the car won’t go anywhere because there’s no traction? the wheels just go around and around in the mud no matter how hard you push the gas pedal. you have to pile rocks and sticks under the wheels to get the car some traction to get going. if you don’t change the conditions the wheels are turning in, you’ll just be sitting in your car all damn day, wasting your gas.
in this case executive dysfunction is having mud under your wheels and the rocks are medication or therapy. you don’t need to ‘try harder’ or spin the wheels faster, you need actual legit help to fix the road conditions.
for people with a chronic condition, life is one long washed-out mud lane to drive across. so being told ‘just go faster!’ or ‘switch gears!’ by people driving paved streets is not helpful. executive dysfunction isn’t the laziness of not wanting to put in the effort, it’s having no traction for that effort to get you anywhere.
How most people with invisible illnesses are treated by health care “professionals”
The Golden Girls didn’t fuck around
pls watch
honestly i really appreciated this scene when I first saw it bc it took me like two years to get a diagnosis for what’s wrong with me
Dorothy: Dr. Budd?
Dr. Budd: Yes?
Dorothy: You probably don’t remember me, but you told me I wasn’t sick. Do you remember? You told me I was just getting old.
Dr. Budd: I’m sorry, I really don’t–
Dorothy: Remember. Maybe you’re getting old. That’s a little joke. Well, I tell you, Dr. Budd, I really am sick. I have chronic fatigue syndrome. That is a real illness. You can check with the Center for Disease Control.
Dr. Budd: Huh. Well, I’m sorry about that.
Dorothy: Well, I’m glad! At least I know I have something.
Dr. Budd: I’m sure. Well, nice seeing you.
Dorothy: Not so fast. There are some things I have to say. There are a lot of things that I have to say. Words can’t express what I have to say. [tearing up] What I went through, what you put me through—I can’t do this in a restaurant.
Dr. Budd: Good!
Dorothy: But I will!
Dr. Budd’s date: Louis, who is this person?
Dr. Budd: Look, Miss–
Dorothy: Sit. I sat for you long enough. Dr. Budd, I came to you sick—sick and scared—and you dismissed me. You didn’t have the answer, and instead of saying “I’m sorry, I don’t know what’s wrong with you,” you made me feel crazy, like I had made it all up. You dismissed me! You made me feel like a child, a fool, a neurotic who was wasting your precious time. Is that your caring profession? Is that healing? No one deserves that kind of treatment, Dr. Budd, no one. I suspect had I been a man, I might have been taken a bit more seriously, and not told to go to a hairdresser.
Dr. Budd: Look, I am not going to sit here anymore–
Dr. Budd’s date: Shut up, Louis.
Dorothy: I don’t know where you doctors lose your humanity, but you lose it. You know, if all of you, at the beginning of your careers, could get very sick and very scared for a while, you’d probably learn more from that than anything else. You’d better start listening to your patients. They need to be heard. They need caring. They need compassion. They need attending to. You know, someday, Dr. Budd, you’re gonna be on the other side of the table, and as angry as I am, and as angry as I always will be, I still wish you a better doctor than you were to me.
Reblogging for any of my mutuals who’ve ever dealt with Dr. Budd.
You’re an athlete. You’re gearing up to run the next 5k in your town.
You get there, and your number’s on your chest just like everyone else. You’re at the starting line, just like everyone else.
Bam, off goes the start signal.
Suddenly, you feel a little funny. Everyone else around you is gaining a lead they shouldn’t otherwise gain. Even the little old lady who does this for fun is now almost 50 feet in front of you.
But you keep pushing, right? You’re bound to catch back up, you’re an ATHLETE.
You pump as much of your strength as you can into your legs. You’re using what feels like every ounce of effort you have in you to just get your legs moving. All the while, that lead that everyone has on you is getting bigger and bigger…
People are suddenly farther and farther away…
You keep going You have no choice. You’ve GOT to finish. And you do.
But that’s when you collapse from exhaustion. Everyone around you is looking at you now, very concerned, wondering what could possibly have gone wrong, you were fine yesterday. You looked fine even the whole time you were running! What could POSSIBLY have happened?!
You can fill in the blanks with any invisible malady you like: heart problems, asthma, fibromyalgia, sciatica, what have you. But it’s SOMETHING that nobody can see. It’s something even YOU didn’t see.
Welcome to mental illness.
EVERY DAY is that 5k. Waking up in the morning is the start signal going off, and no matter how much energy we could put into something as simple as making breakfast, suddenly everyone else around us has their day’s tasks half way done and we’re still standing in the kitchen choosing eggs or bacon as though our lives depended on it. And sometimes, it does.
Eating is a chore. Standing up is basically like asking us to climb a mountain. Taking care of ourselves is tiring. Let alone taking care of someone else, if we need to.
That collapse at the finish line of the day could be a panic attack, it could be a fit of tears, it could be the mounting and exploding feeling that you’re a failure, you’re worthless, why do you even bother. It could even be an angry and persistent suggestion that you should just kill yourself so you’re not wasting space.
And let’s not forget, we didn’t do this to ourselves. We couldn’t have predicted this, we aren’t just sitting there asking for people to pamper us, in fact sometimes that makes us feel WORSE.
And at the end of the day, quite possibly the best thing you could do is hold us, tell us it’ll be okay, and just listen.
Most often, there’s no rhyme or reason to our thoughts. I was a straight A student for a long time and if I got less than 80% on ONE test, I flipped out and resigned myself to failure. But anyone else would’ve been like ‘Sweet, I passed!’ People tell me I’m doing well at work, and I’ll just focus on that one mistake I made two weeks ago and oh well, I’ll get fired tomorrow.
We DO NOT DO THIS ON PURPOSE. And it’s not as easy as saying ‘Oh just stop being so hard on yourself.’ That’d be like asking your athlete self to just grow some new lungs/muscles/heart valves and you’ll be fine.
We know you want to help. ❤ And most of us appreciate it SO MUCH, OMG THANK YOU. But sometimes, cuddles, blanket forts and movie binges are enough to keep us going. We don’t need to talk or reason things out all the time.
Some disabilities are more obvious than others. Many are immediately apparent, especially if someone relies on a wheelchair or cane. But others — known as “invisible” disabilities — are not. People who live with them face particular challenges in the workplace and in their communities…
Holding the Bowl 