There were so many signs that my health was declining Yet instead of realising that something serious was happening, I blamed myself for not trying hard enough for Not being good enough
Do you do things physically struggling, miserable with post exertional malaise and push through or do you wait until you feel better so that you can really appreciate what you are doing/seeing??
my standing-to-dizzy time has honestly improved a lot since i started weight training. as far as exercise for dysautonomia goes, doing things specifically to improve your muscle tone (as opposed to stamina-based exercise) has the most efficient spoon expenditure to long term spoon capacity improvement
”No other disease in the history of modern medicine, has been neglected in such a way as Ehler’s Danlos Syndrome” Professor Rodney Grahame
EDS is a group of connective tissue disorders, our collagen is defective. Collagen is a major component of the human body. This causes a wide variety of multi-systematic symptoms. EDS is incredibly hard to diagnosis and not widely known. It is extremely hard to for doctors who are not educated in EDS to put together symptoms like constant nausea, dislocations/subluxations, hyper-mobility and easy bruising (just to name a few). Because of this, EDS is considered a rare and under-diagnosed. We are not rare, just rarely know.
Ehler’s Danlos Syndrome as all to often been overlooked, misunderstood and mistreated. As with many other rare and invisible illnesses. Here are some facts about EDS:
EDS is a connective tissue disorder.
It is something that effects the entire body, it does not just make you extra bendy.
There are 13 identified subtypes, with some being ultra rare.
It is an invisible illness.
It is a life changer.
Not just a ‘minor inconvenience’.
It is valid.
Don’t let anyone tell you differently.
“It’s like when you run a marathon, and you’re sore for the next couple days, but that feeling never. Goes. Away. You rest, it still hurts. You work out more, it still hurts. You take pain medicine, it still hurts. You change your diet, it still hurts. You do every possible thing you can think of, it still hurts. But then you have to pretend like you’re fine otherwise you get ridiculed which just makes everything worse.”
It’s EDS awareness month once again and the reality is awareness is not enough.
For those that don’t know EDS is a connective disorder that causes a wide array of symptoms from joint dislocations to chronic nausea and so much more. There are 13 identified subtypes, all but one having an identified gene and some being ultra rare.
EDS has been overlooked, mistreated and misunderstood for far too long. Patients seeking care and understanding are often met with disbelief from the very people who are supposed to be helping us. We as patients with EDS are denied our own experience by our healthcare providers, the very people who are supposed to help us. There are not only chronic health issues when met with a lack of understanding but also psychological implications. According to Loreen Myerson, an anthropologist and a person living with EDS - “The healthcare experience of anyone with EDS appears to be much the same. Almost without exception, negative.”
Up until 1980 Hysteria was a studied psychological disorder that was thought to be caused by female reproductive organs. Women’s pain is all too often dismissed and ignored, a recent study published in a Pennsylvania journal found that women typically wait 16 minutes longer to receive pain medications than their male counterparts in an emergency room setting. A survey of 2,400 women with chronic pain published in the National Pain Report found that 90% of women feel that their healthcare system discriminates against women. Another study found that women who are in the emergency room with acute abdominal pain wait on average 65 minutes before receiving analgesic (painkiller), while their male counterparts receive analgesic wait on average 49 minutes.
I look back at my childhood and all the signs were there, they were just simply dismissed and ignored by the people who were supposed to be helping me. look back at my childhood and all the signs are there. Women are disproportionately affected by EDS. EDS is still overlooked, misdiagnosed and mistreated by the very people who are supposed to be helping us. My story however is not unique, both anecdotal evidence and peer reviewed research are pointing at disturbing trend that it is not at all new, women are more likely to be dismissed and overlooked when it comes to chronic pain and other health issues. In a peer reviewed study published in the Autoimmunity Reviews found that autoimmune diseases disproportionately affect women with 65% of patients being women. 85% of thyroiditis, systemic sclerosis, systemic lupus erythematosus and sjogren’s patients are female.
This is a cultural issue that we must continue to fight for ourselves and those to come, as demonstrated above both my peer reviewed research and personal narrative. These issues are ever present in our society and women’s pain is taken less seriously whether it comes to emergency care or by a primary care physician.
EDS is misunderstood, overlooked and mistreated. But there is so much hope for the future. All of us zebras who are fighting for more awareness. Hopefully in the future it won’t take us on average 20 years to be diagnosed.
Technically, it was 3 years for me… but I was already just into my forties and it took a serious cascade of symptoms to get the diagnosis ball rolling. Looking back, there were clues right back to my childhood so really, it took four whole decades.
sleeping forever because of the fatigue and then finding your entire body is sore and at least 3 different joints are no longer where they belong because you stayed in bed for too long
I went to bed at 6:30pm last night and woke up at 5am. Then I took a nap and slept from 8:00am to 10:00am. At 1:00pm I took another nap and I woke up at 11:30pm. Sometimes I amaze myself at how much I sleep
I got a rheumatologist tell me to wear uggs or crocs to help with my feet
Those are literally the worst shoes someone with flat feet and feet that literally seem to be collapsing and changing shape could possibly wear? They aren’t supportive at all
Then she told me to exercise wearing them!! You can’t exercise in crocs oh my god I couldn’t even respond I just stared at her I’d been waiting to see her for months because she’s supposedly an expert and just… wow
What the fuck. Honestly in my experience rheumatologists are the absolute worst for having no idea what the fuck they’re talking about. I’m really sorry that happened, it must’ve been really frustrating, especially because you’d waited so long to see her. Uggs…………..
-Rhys
I’m gonna try my damn hardest to go to college and medical school to become a rheumatologist. If I succeed I want you guys to come to my office. I will not let you down.
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.
“Shut up, Lewis”
This moved me to tears. It’s upsetting how I, and so many others, can relate.
So far I made myself a healthy breakfast (a feat in itself), washed the dishes, unloaded the dishwasher (my back and wrists didn’t hurt!!), took out the trash, did three loads of laundry, cleaned out my fridge, cabinets, bedroom, and bathroom. God bless good days. I haven’t had one in weeks.
I absolutely hate when people say “so and so did x in spite of their disability” or “so and so overcame their disability and did x.” Because really, that’s not how it works. Disability and illness shapes a person and their experiences. Most of the time, it’s not “in spite of” our disabilities, it’s because of them.
Let’s look at some historical examples, shall we?
Take FDR. He was a wealthy, pompous playboy from a political dynasty who Gatsby-ed his way through the Roaring 20s without ever experiencing the real world. He didn’t become president in spite of having polio, he became president because of it. At a time of national hopelessness and desperation, his polio put him into the real world- into a place of understanding for the common man affected by The Depression. It humanized him and it got him 4 terms. It inspired the March of Dimes which consequently ended up funding Salk’s vaccine. That’s not “in spite of,” that’s becauseof.
Beethoven did not make music in spite of being deaf. In fact, he revolutionized Romantic music because of his distinct lack of high notes. His symphonies, especially his later works, are all much lower than what was common at the time, and it was all because he couldn’t hear high-pitched sounds.
Frida Kahlo did not blur the lines between Expressionism and Surrealism in spite of being disabled, she did it because she was bedridden and bored. Because she was in pain and she was shunned. In the same way her relationship with Diego Rivera inspired her works, so did being disabled. She didn’t overcome anything expect societies limitations.
The truth is, disability and illness are integral parts of our identities and they do shape our lives. The worlds we build and create are not made by overcoming the hindrance of disability, they are made because of the perspective it gives up.
Erase the idea of in spite of. Erase the idea that our success comes from overcoming anything other than deep-seeded ableism.
My Ehlers Danlos Syndrome is the reason why I want to become a rheumatologist. I want to be able to help people like me. I want to be the one doctor for them who doesn’t think it’s all in their head or who has heard of their disease. I want to spread awareness and make a change.
to anyone who thinks those of us with invisible disabilities have “passing privilege”:
being denied access to resources you need is not a privilege.
being refused disability benefits at first glance because you look “healthy” is not a privilege.
getting dirty looks and having insults thrown at you for parking in a disabled space, using a disabled toilet or sitting in disabled seating is not a privilege.
getting accused of faking or exaggerating because “you look fine” is not a privilege.
being made to feel like you shouldn’t sometimes use mobility aids/wheelchairs because you “seem fine without them” is not a privilege.
having doctors not believe you’re sick and even refuse to give you any tests or diagnosis is not a privilege.
being denied treatment and medication because doctors don’t believe you really need it is not a privilege.
constantly being told that “you don't look sick” when you tell someone about your disability is not a privilege.
being forced to do things that you really struggle to do because “you seem fine”and “you CAN technically do them” is not a privilege.
constantly worrying about how you look and if you should wear certain clothes, make up or do your hair because you’re afraid it might give people another reason to deny your conditions is not a privilege.
being afraid to even tell people about your conditions because you’re worried about how they’ll react and if they’ll believe you is not a privilege.
having your own loved ones question you is not a privilege.
questioning yourself and wondering if it is all in your head is not a privilege.
looking healthy does not mean you get the privilege that comes with a healthy body and mind. having an invisible disability is NOT a privilege and never will be.
Having people tell you your illness ‘isn’t even real’ is not a privilege.
Having people joke about your illness and how it’s all made up so you can be lazy or get money from the government is not a privilege.
Having people question why you need a service dog because you ‘look fine’ is not a privilege.
Having people ask who you’re training your service dog for because they assume it’s not for you is not a privilege.
Having people aggresively approach you and demand to know the details of your illness so they can ‘confirm’ you actually needa service dog is not a privilege.
Having doctors shrug and tell you there’s nothing they can do because there’s not enough research on illnesses you can’t see is not a privilege.
Being told you have to give up a disabled seat on the bus for someone else because you don’t ‘look disabled enough’ is not a privilege.
Having people give you the side-eye for sitting when there’s only so many open seats because they assume you’re fine is not a privilege.
Having someone look at you as if you’re disgusting when you openly admit ‘I’m disabled’ in public, despite how difficult it is to do so even in private, is not a privilege.
Having an invisible disability is NOT a privilege and never will be.
I was discussing my conditions with a friend, and she mentioned that it must be a good thing that they are invisible, for if I don’t look sick than people won’t look at me differently. I was honestly surprised at first by her way of thinking; however, I wasn’t mad because she is my friend and it really was just a bit of ignorance. I took the time to explain these reasons to her and she understood. So I thought I’d reblog this in hopes of spreading awareness.
In November 2014 I was diagnosed with Ehlers Danlos Syndrome (EDS), a rare genetic connective tissue disease characterized by joint hypermobility, chronic pain, and more. My diagnosis was both a blessing and curse. At first I was thrilled because I finally knew what was wrong with me. Throughout my entire life it was clear that I was different. I couldn’t run like everyone else, I held a pencil strangely, my joints would constantly ache, and my fingers looked very odd due to their bendy nature. Most people, including myself, just thought I was weak. I tried exercising; I took swim, ballet, tap, jazz, hip hop, and gymnastics classes. However, I always ended up quitting because it hurt too much. At one point I was told I needed to see psychiatrists because the pain “was all in my head”. Based off of my appearance, I was a perfectly healthy young girl. So after finding out that I had EDS I was relieved. I already knew I wasn’t crazy, but now everyone else knew. My chronic pain and frequent excuses for not participating in “easy” activities were finally justified. Nevertheless, my diagnosis terrified me. Upon being diagnosed I was quickly referred to a cardiologist, for heart problems are extremely common with EDS. In fact, EDS affects almost every part of the body, because collagen (the connective tissue EDS affects) makes up 30 percent of your body tissue and 70 percent of your skin tissue. After getting heart tests done, my doctor discovered that I had frequent premature ventricular contractions.That alone didn’t scare me; what scared me was that my problems got worse. My joint pain, my heart problems, my eye sight, my gastrointestinal reflux disease, they all got worse. And with my condition, a lot of it will continue to get worse. It is very likely that one day I will need surgery or that I will be in a wheelchair. And this is why this tumblr is so important. It is a call for awareness, and it is a call for research. Research that may lead to cures, so I won’t have to suffer any longer
