WHAT WE'RE ABOUT
We are constantly redefining our own perspectives, and therefore tend to write a lot about our personal experiences. Many followers and contributors are living with anorexia, bulimia, body dysmorphic disorder, depression, and a variety of other body image disorders or mental illnesses, so please be respectful and remember that health applies differently to everyone. Any and all potentially triggering content will be prefaced with a trigger warning.
RBI supports all races, genders, classes, and sizes. We try our best to make this a safe space for everyone. If we are not doing our job or checking our privilege, we invite you to please inform us.
Some of the artwork you see here has been created by our founder or moderators, some sourced when applicable. Please be kind enough to source this blog whenever you share it's content.
We are not health professionals. Any and all advice provided on this blog is supported only by our own research, studies, and personal experiences; nothing more.
This blog is part of the Safe Space Network.
At least two personal friends e-mailed me last week with a link to this interview. I just listened to it and now I can really see why. Laurie Edwards talks about her life with a rare disease. She shares her perspectives as well as some insights into what it’s like to live with a chronic condition. She talks about a number of things that I know many of my readers will be able to relate to, including:
- financial issues
- fatigue
- struggles with pregnancy and childbirth
- being in pain but still wanting to do “normal” things like hold a job and go to school
- stigmas and prejudice she’s felt as a woman with pain (being dismissed as “overly emotional”)
- how amazing it is that we can connect to other people with chronic conditions and illnesses through the internet
- when to tell someone you’re dating about your condition
- and tons more
This quote particularly struck me:
“What’s really hard about it is…it’s a diagnosis of exclusion. You can’t just get a blood a test and you can’t just get a scan and get an answer, and I think that ambiguity can cause a lot of problems”
That’s exactly what I’m going through right now - how do you diagnose something like EDS? You need to find a doctor who knows what it is, first of all - that can be a challenge all on its own. And she’s right - you can’t just get your answers from a blood test or brain scan. There’s all kinds of nuance within genetics, symptoms, etc. etc. and it can take a lot of time, and even more energy.
The interview is just about half an hour long, but definitely take some time to listen to it.
This website is an extension of the Spoon Theory narrative written by Christine Miserandino.
This website contains a demonstration/game that shows a glimpse of what life is like as a chronically disabled person. The demonstration, answers to common questions, and resources can be found on the side of the page.
The point of this website is to facilitate communication between disabled and able-bodied people; the outcome of this is better relationships, increased communication, increased well-being of disabled people, and increased performance at school and work.
In addition to the resources on the side of the page, I will be updating the website frequently with interesting news about disabilities, communication skills, and general disability advocacy.
Questions? Comments? Send me an ask, or contact me at spoontheoryproject@gmail.com.
This. Is. Fucking. Brilliant. - Haley
Tired Femme
My little chubbers
A fellow Fibro Femme <3
I wanna start a club
- Healthy People: I hate my body!
- Spoonies: My body hates me!
- Healthy People: I hate my job!
- Spoonies: I wish I could work!
- Healthy People: I stayed out too late; I'm so tired today!
- Spoonies: I washed my hair today; I'm too exhausted to do anything else!
- Healthy People: Why are you depressed?
- Spoonies: There's no "trigger" for depression; it's not just sadness. Depression happens because the chemicals in my head are screwy!
- Healthy People: Why don't you ever want to do anything?
- Spoonies: You have no idea how much I WANT to do stuff, I just CAN'T sometimes.
- Healthy People: I wish I could stay in bed all day!
- Spoonies: I wish I could get out of bed today!
- Healthy People: Want to go see that new movie at the theater?
- Spoonies: *thought process* well, there are 4 stairs to leave the house, 28 steps to the car, the car ride will probably aggravate my headache, more steps and more stairs once we get to the theater, two hours in an uncomfortable chair and $15 to watch a movie I'm probably not going to remember, anxiety from being around so many people, car ride home, getting back into the house...and I have maybe 2 spoons left today. How important is this person to me? Can I push through? Will (s)he mind if we just stay in and catch an older movie on TV?
- Healthy People: If you were more active/ate better/lost weight/etc., maybe you would feel better
- Spoonies: I'm doing everything within my power to feel better. Sometimes being active is impossible, what I eat is dependent upon what my body can digest, and weight loss is difficult when the first two are beyond my control.
- Healthy People: I just read that this new diet/supplement/medication/alternative therapy/yoga pose/etc. can help people with your condition.
- Spoonies: If there is something that has shown promise in my medical community, there are people who have tried it. I have likely tried it. I know you just want to help me feel better but you're making it seem as though there's some "magic cure" out there and I'm just not trying hard enough.
- Healthy People: What doesn't kill you makes you stronger/God won't give you more than you can handle/Positive thinking/the power of prayer/any other cliche saying
- Spoonies: Sometimes, what doesn't kill you makes you beg for death. Also, please don't quote scripture or talk to me about God and prayer if you aren't familiar with my religious beliefs. Not only might that be offensive to me but, also, this has seemed like more than I can handle for way too long.
- Healthy People: Check out the new bag I bought!
- Spoonies: *thought process* would all my meds fit in that?
- Healthy People: How does my butt look in these jeans?
- Spoonies: Oh, crap! Did I put on shoes today?
- Healthy People: Doctor, what's wrong with me?
- Spoonies: When we left last time, we were talking about this symptom I've been having. I did some research, I think it might be...... (and they're usually right!)
I just wanted to share my story with you, in hopes that maybe it could be used to help someone else.
When I was 18 years old I was involved in a severe accident that I only made it out of by the grace of God. The accident left me scarred, both physically and mentally, and it also left me struggling to re-define myself and my place on the Earth. I live with a traumatic brain injury now but, with the help of my friends and family, I am able to live a fairly normal life.
I guess you’re wondering why I’m even telling you all of this? Well, I only just came across this blog a few days ago so I don’t know how familiar you are with TBIs but, people with TBIs often have to deal with bouts of depression, some worse than others, learning disabilities, and heightened paranoia, among other issues. The depression is the worst though. I used to be fairly active but now, sometimes it’s hard for me to even leave the house. This, of course, affects my weight negatively, but I am fighting back! Over the last few weeks I decided to stop letting my TBI symptoms hold me back. I found that if I make myself, absolutely push myself, then eventually my mood turns around. I am already making positive steps towards a healthier me and much brighter future!
I guess I just wanted to come on here and say “Thank you!” for offering a safe haven like this. I’ve been in that place where it feels like everyone has turned their back on you and just need somewhere to go and I love that I have finally found somewhere safe to just be.
(Oh, I am now 24 and I’ve been married for a little over 3 years to an amazing man! I did have to drop out of college because of my injuries, but I plan on going back very soon!)
I am a college student at a top university. I also struggle with mood, anxiety, and dissociative disorders. This list reflects (some of) my experiences. It is what I want to send to my professor who is being stingy with extensions and far from understanding. But I can’t. Feel free to reblog,…
Relevant to the discussion of fat-shaming doctors, this is a list of doctors worldwide who cater to fat-bodied individuals. Many of the doctors on this list offer things such as larger blood pressure cuffs, bigger hospital gowns, and don’t blame every medical problem a patient comes in with.
It’s not by any means a full list, nor does it cover every area, so if you have a fat-friendly doctor who’s not on the list, get in contact with the site to get them added!
This is an excellent resources so I thought it would be of help to those who face stigma from their current medical professionals :)
submitted by liquifiedbaby:
Huge rant here. It might make no sense at all because I am not a native english speaker.
—-
I’ve been chubby since my childhood. When I turned fifteen my mom and I decided to go to the gym and lose some pounds.
It was fun and I grew stronger and I just loved myself in the beginning.
But it all changed only within the first or second month because I fucking hate gym.
I hate counting time, lifts, I hate lifting heavy things while I have barely opened my eyes. I gave up many times but my mom just kept bothering me about my fatness so I would hate my body enough to go through that torture again.
She kept waking me up early in the morning (I fucking hate waking up at 6 am) and dragged me to that same boring classes every damn day.
I learned to exercise until I feel pain because that meant that my muscles were getting stronger and that my fat was melting away (?), but last year the pain went a little too far.
Long story short, I felt a little pain on my right leg that just wouldn’t stop. I didn’t even bother at first because I “knew” it would go away with the time.
Chronically Sexxxy is a blog that exists to help people with both visible and invisible illnesses navigate the complex world of sex, relationships, and body issues, and all that entails.
We are here to help, and if we can’t help then we can at least field your questions to a larger audience or point you in the right direction. There aren’t many resources out there about sex and relationships for those of us whose bodies work differently than the standard. We hope you will like and reblog this post and aid us in reaching a larger audience, and maybe together we can create a strong, information-centric community that truly gets to help people.
You can ask us questions via our askbox, using the submit feature, or send us an email at chronicallysexytumblr@gmail.com.
Thanks, and as always, we’re here to help!
I love, love, love this blog.
Seeing a couple Crohnies on here talking about this stuff makes me insanely happy. It’s good to know there are people who actually do understand how awkward some situations can be if you aren’t prepared. And sometimes even if you are.
I have had Crohn’s since I was only 9 years old. I am 22 now. And I can say the disease has affected every part of my life, especially sex and relationships. The illness has made me feel as though I am unworthy of a relationship, because I am not normal, because I have a “gross” illness. A bathroom illness as some people call it. Having bowel problems can be really awkward in sexual situations, which is why I have very minimal amounts of those situations.
On top of that, I have had two major surgeries for the Crohn’s. And a minor one to repair an area that didn’t heal right. It left two huge scars on my lower stomach, as well as an awkward hole area pretty low that looks like an extra belly button. Super awkward to explain, but I am learning to live with the scars. They are becoming a major part of me. Almost everyone has scars of some kind, obvious or not. They aren’t gross to me anymore. They are stories to tell. Badges of honor.
I also have psoriasis, as some of you may know, is a very visible skin condition. I’ve had it since I was about 14. It has made me even more self conscious in sexual situations. Psoriasis tends to give me red, scaly patches all over my body, even in my pubic area. People kinda freak out about it. Seeing any abnormalities or red spots in the genital area is “gross” and “unhealthy”. It is only recently with the help of the body positivity movement here on tumblr that I was able to learn to share my body with people I trust. I am still very self conscious about a lot of things, but knowing there are others with these problems helps. It makes me realize that “normal” is different for everyone.
Letting yourself be controlled by awkward situations leaves you more alone than you can think, because you begin to hate yourself, because you aren’t normal. Being open about things like this breaks through the awkward barrier. Get the dirty part out of the way. Make sure that your lover/significant other is aware of all of these things, and can handle going through it with you.
I relate to this on so many levels.
And it’s true - being open about these things breaks through the awkward barrier. I’m so thankful I’ve found someone who understands my conditions, doesn’t judge me for them or stop at the “ick” factor.
While I don’t have Crohn’s or psoriasis, I have always had gastro issues and seborrheic dermatitis and acne and hives. I’m still not completely sure what, aside from diverticulosis, is wrong with my digestive system. Doctors have suspected IBS in the past but it seems more linked to stress/anxiety so who knows really.
I used to think I would never find love because of these things. That was really silly of me, although it kind of makes sense when you consider most people in my life were disgusted or put-off by my conditions - so what else could I deduce?
If I didn’t have my love with me now, helping me every step of the way, rubbing my tummy when it hurts and soothing my sore skin with kisses…I don’t know where I’d be right now.
Asked ellenwilberg
My pleasure, I’m so glad you found it as helpful as I did. <3
[Disclaimer: I’m obviously not a doctor, please discuss ANY change to your workout/lifestyle with your doctor. If walking isn’t feasible for you, a physical therapist or occupational therapist should be able to help you design an appropriate workout. (I realize a number of people following can’t walk around the block, I’m not trying to be a dick - just sharing my experiance)]
As much as I hate to do it (or admit to it) I do exercise daily. I’ve mentioned before that I’ve recognized my Exercise Donut Hole, and I’ve reblogged things about it when I didn’t have brain power to write. As much pain and fatigue as my body causes me when moving around, a complete lack of exercise makes my pain and fatigue noticeably worse, which I’m pretty sure is irony distilled. HeathersDay wrote a great piece about this, detailing why exercise is more difficult for Fibro:
- During exercise, blood flow increases to muscles to bring important nutrients and remove wastes from the tissues. If wastes, such as lactic acid, build up in the muscles, anyone can develop exercise-related pain. Blood flow to the muscles during exercise is lower than normal in people with fibromyalgia, making exercise more painful.
- Normally, exercise helps reduce pain by increasing pain-blocking brain chemicals, such as endorphins. However, these pain-blocking pathways are less active and less responsive in people with fibromyalgia, which is another reason why exercise may be more painful.
- People with fibromyalgia have reduced exercise tolerance. They may have abnormalities in the autonomic nervous system, which controls heart rate and blood pressure, and this, in turn, increases fatigue.
- Hormonal factors may also play a role. For example, growth hormone helps repair the tiny muscle tears (muscle microtrauma) that occur with exercise. The deficiencies in growth hormone associated with fibromyalgia may impair this repair mechanism.
It’s a battle every morning to get moving, but the day is easier when I do, and harder when I don’t. I am in screaming pain every morning, and it’s often difficult just to dress, but over the years I’ve crafted a morning care plan that gets me going (more on this later). My dog is trained to talk to me when he needs a walk, and I’ve trained him far too well. Even on flare days, he will fuss until we stroll, my own furry personal trainer. I can’t run or jog, too high impact, but I walk my dog every morning and almost every evening. I also occasionally take a dance class, and swim at least once a week.
I’ve tried “Working out” like normal people do, with 20-30 mins of aerobic exercise and weight training, but the cost in pain and suffering is too great for such a little reward. So I stick to my donut hole, my Goldilocks zone of acceptable physical exertion. I’ve been working on finding this happy medium for over 10 years now, finding the amount of exercise that’s just right is a long but worthwhile process.
Also, I made you a cute graph to illustrate; In this case, the cakey body of the donut is bad (twilight zone!) representing either too little or too much exercise, and the little donut hole is GOOD representing an amount of exercise in between the two sweet cakey bad’s.
MY donut hole = about .5 mile of dog walking 2x daily
This is just fucking brilliant. While my conditions are much different, the desire I have to define exercise that is right for me is very similar, and it has been a long process…but I am finally finding my donut hole :3
its ok to be fat and unhealthy
its ok to be fat and sick
its ok to be fat and have a body that hurts
can we please just remember that and stop trying to justify fat bodies with normative/ableist ideals???
TW: eating disorders, dieting, weight loss, mental instability…
Yeah. In the past I really struggled with disordered eating and terrible body image, and I now embrace size acceptance and body acceptance, and health at every size, and all that good stuff… But my body is my own. I am fat positive, and I am, I guess, dieting. I don’t restrict calories, and I don’t punish myself if I eat something “bad,” but because I think carefully and planfully about what I put in my body, and because there are things I don’t generally eat, I guess by any reasonably definition, I follow a diet. And I want to lose some fat.
At my current height (5’5”), I’ve weighed as little as 130 pounds and as much as 210. I think around 145 was probably best for me, personally. But I don’t even know, because I am fitter now at 175 than I was at 145. Why, then, do I want to lose fat? I’m not really trying to. And yet I have been, slowly and steadily, for the past year. I subscribe to the theory Linda Bacon propagated in her book about the set point, that every body has its range of proper weight, and I know that mine was not at 210 (or 130). I want to see where I really fall, when I treat my body well.
(I also want to compete in powerlifting and Olympic lifting at some point, and being in a lower weight class would mean a competitive advantage for me, since I’m not that strong (yet).)
There’s a rhetoric in the fat acceptance community of disapproval of dieting— for good reason. The diet industry is poisonous. But if we subscribe to the idea that our bodies are our own, it is wholly disingenuous for us to shame people who choose to do different things with their bodies than we might. I’ve seen this shaming happen a lot, even from the wonderful Kate Harding, of whose erstwhile blog I was a faithful reader. To Harding, even a “lifestyle change” is a “diet”, and every diet is bad. Well, I went from not exercising ever and eating nutella straight out the jar (really, I could go through about three or four a week) to lifting heavy, doing yoga, commuting by bike, and eating a much healthier diet. Because of this, I’ve seen some weight loss, and I have the temerity to be happy about it, and to hope to see some more. I want to see the muscles I’ve begun to build, under my skin. Masked by fat, they’re still there, but I (selfishly? vainly?) want to see them. And yes, I want to show them.
Should I feel bad about this? Am I betraying my fat brethren? I don’t think so. My body is my own to mould, sculpt, attempt to honour, and learn to love, as hard as that can be. I have the scars (literally and figuratively) of rapid weight gain and subsequent gradual loss, and my body will never be what it once was. But I have it, I own it, and it’s the only one I’ll ever get. It’s my choice what to do or not do with it, as much as it is for everyone else.
No, I don’t think you are, either.
I respect what other people do with their own bodies. It’s wonderful. And I expect that kind of respect in return.
I am not in a place where I can think about weight loss. It’s not healthy for me. I’ve been battling with it a lot lately. It’s been really fucking hard. And weight-loss rhetoric is fucking everywhere.
I don’t know where I’m going with this, I’ve just been thinking about it all for a while and sometimes I think I’m going in an unhealthy direction again with my eating habits and it’s kind of scary?
I wish it were that easy for me, to just start making the “proper” decisions and finally make that inspiring “lifestyle change” that everyone around you seems so capable of achieving. I really fucking do. But it’s not that fucking simple when you live with chronic and mental illnesses. It just isn’t.
And it seems like the whole world doesn’t respect that. Or understand. Because most of the world doesn’t.
I don’t know.
So, I’ve got diverticular disease - pockets that protrude from my colon. Lots of people have it, but mostly a lot of old people. I suspect I have it at such a young age as it can be hereditary and my great grandmother always had it. Actually, a fair few people in my family have gastrointestinal disorders.
I’ve also read that it primarily exists in western culture as a result of eating too much processed food. More on that later.
I’ve always had stomach “issues” since childhood, but my family doctor could never pinpoint an issue. It wasn’t until I came down with what was suspected to be food poisoning that I found out about these little pockets on my colon.