29 People With Ehlers-Danlos Syndrome Explain What It Feels Like

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Ehlers-Danlos syndrome (EDS) is a group of connective tissue gene disorders, and symptoms include skin that tears or bruises easily and unstable joints prone to frequent dislocations, among other issues.

EDS affects somewhere between 1 in 2,500 to 1 in 5,000 people in the United States, but understanding of the disorder tends to be limited among society and medical professionals. Some individuals with EDS remark that their doctors don’t even know how to spell it, and the most common analogy likens the body of someone with EDS to that of a house built with faulty materials.

“Our EDS community formed out of a need to understand ourselves even when medical professionals did not,” a spokesperson for the Ehlers-Danlos National Foundation told The Mighty. “Awareness about EDS leads to better lives. Although EDS is not curable, early diagnosis can limit long-term damage as problems can be treated as they arise, and sharing information in our communities about what has worked for each of us can help all of us.”

We teamed up with the Ehlers-Danlos National Foundation to ask their Facebook community how they would describe the disorder to someone who doesn’t have it.

Here’s what they had to say:

1. “It feels like I’m 80 when I’m 40.” —Kimberly A. Bates

A quote from Kimberly A. Bates that says, “It feels like I'm 80 when I'm 40."

2. “It feels like having the flu all the time.” —Linnie Lin

A quote from Linnie Lin that says, “It feels like having the flu all the time."

3. “I feel like an alien on a planet where I don’t belong.” —Yolanda Smith

4. “It feels like I’m slowly disintegrating into particles…” —Sarah-Marie Zeraphic-McFarlane

A quote from Sarah-Marie Zeraphic-McFarlane that says, “It feels like I'm slowly disintegrating into particles…”

5. “It feels like my body is falling apart at every joint.” —Breanna Griggs-Meloy

6. “It’s like a big pair of knickers with no elastic left.” —Christine Di Ciacca

A quote from Christine Di Ciacca that says, “It's like a big pair of knickers with no elastic left.”

7. “It’s like having the flu, a hangover and getting hit by a bus all at the same time.” —Irene Beck

8. “I feel like a marionette and someone else is in charge of the way I move.”Nicole Hess

A quote from Nicole Hess that says, “I feel like a marionette and someone else is in charge of the way I move.”

9. “It feels like your body is trying to turn itself inside-out, piece by piece.” —Aria Eragon

10. “It feels like I’m made of rubber bands that are about to snap.”Katie Thomson

A quote from Katie Thomson that says, “It feels like I'm made of rubber bands that are about to snap.”

11. “It feels like you’ve lifted a car off someone all day every day.”—Melissa Conder

12. “It’s like an old house, creaking, squeaking swaying, and popping in the night, the wooden walls and nails coming apart at the slightest breeze.”London Elaine Ridenour

13. “It’s like riding a bicycle with very loose bolts. You have to hold it together yourself or else it will fall apart.” —Melissa Drennan

A quote from Melissa Drennan that says, “It's like riding a bicycle with very loose bolts.”

14. “EDS is living the day after a car accident in perpetuity.” —Sabrina Winchester

A quote from Sabrina Winchester that says, “EDS is living the day after a car accident in perpetuity.”

15. “The pain is like sand paper being wiped on the inside of your skin all the time.” —Tiffani Rinzel

16. “You cannot trust your body to do what it is supposed to do.” —Emma Stathopoulos

A quote from Emma Stathopoulos that says, “You cannot trust your body to do what it is supposed to do.”

17. “It’s like trying to build a tower out of misshapen blocks, where the tower is your body and the blocks are faulty collagen.” —Courtney Simonds

18. “The hair on my skin hurts.” —Mary Carlson

A quote from Mary Carlson that says, “The hair on my skin hurts.”

19. “You feel like you are constantly disappointing people because you have to cancel plans at the last minute when you are in too much pain, too sick, or too depressed to leave your house.” —Lisa Allison

A quote from Lisa Allison that says, “You feel like you are constantly disappointing people because you have to cancel plans.”

20. “A 3 on a pain scale of 1-10 is a good day.” —Laurie Bohanan

21. “I feel like I’m falling apart at the seams.” —Lisa Sinnott

A quote from Lisa Sinnott that says, “I feel like I'm falling apart at the seams.”

22. “EDS is feeling ‘insane’ for years because people tell you there is nothing physically wrong when you know there is.” —Sarah Elizabeth Erwin Bloom

23. “You have to deal with the idea that your body is basically falling apart and there’s nothing you can do to stop it.” —Erin Geerlof

24. “EDS is the hypochondriac’s disease — always being questioned about whether or not you’re really in pain, or if everything wrong with you is really connected or not.“ —Sage Schultz

25. “Dislocations are like walking on glass, not knowing when you’re going to get cut but you know it’s inevitably going to happen. It sparks an unnatural fear that is hard to live with.” —Ariel Amberg

A quote from Ariel Amberg that says, “Dislocations are like walking on glass.”

26. “The cruelest symptom of our illness is disbelief by medical personnel.” —Mary Carlson

A quote from Mary Carlson that says, “The cruelest symptom of our illness is disbelief by medical personnel.”

27. “It’s like falling down the up escalator indefinitely while bystanders speculate about how you got there, what your injuries might be, and if you really even look hurt.”Jess Elsen

A quote from Jess Elsen that says, “It's like falling down the up escalator indefinitely while bystanders speculate about how you got there, what your injuries might be, and if you really even look hurt.”

28. “It’s like having everything in your body short circuit.” —EmJ Jackle-Hugh

29. “Day to day I feel like a stretchy rubber doll that’s working hard to stand up straight; bad days feel like I’ve been hit by a car, but the good days make me feel like I can still conquer the world!” —Beverly Wilson

A quote from Beverly Wilson that says, "The good days make me feel like I can still conquer the world!”

29 People With Ehlers-Danlos Syndrome Explain What It Feels Like

Some answers have been edited for brevity and clarity.

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To Myself, When I Struggled to Accept My Ehlers-Danlos Syndrome Diagnosis

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Dear newly-diagnosed-with-Ehlers-Danlos-syndrome Karina,

I know this was a shock. I know this changes everything, and all you can think is “holy sh*t.” And I know you have no idea if you should cry out loud or if you want to laugh because it was less shocking than it was a relief to finally know it is absolutely not just in your head.

It is real. All the years you suffered were real, and it was not your fault that nobody found the cause of your symptoms. You can be sure you did all you could to find a solution. There were some lucky coincidences along the way, but without your effort you would still be without a diagnosis. You have to stop thinking it is your fault you had all those wrong treatments and diagnoses. There is nothing more you could have done.

I know until this point you thought there would be an easy fix for this problem — a surgery, a medicine, something that would give you your life back. But let me tell you, this is your new life, and the sooner you accept it the easier it gets. You need to learn to live with your disability and not act against it. You have to accept your limitations.

Stop pushing through the pain. You are not doing any good for yourself. Stop thinking, “But I have to be able to do this.” The only thing you “have to” is survive. You need to stop trying to help everyone around you and start helping yourself. You were always a perfectionist, and I know how you struggle with simply not having enough energy for all the things you want to achieve. You now have to take care of yourself first. You have to learn that you have to set some priorities, because you cannot do everything on your to-do list.

You feel incomplete and less worthy because you are not able to have a job. You feel like you are not worth being loved because you lost everything you always defined yourself through. But you are wrong. You now have the chance to find the real you. You will find your personality, your fate, your passion. This is a chance and not a burden.

I know you tried to hide in your dreams where everything was fine. That is also OK. Sometimes you need a place to hide. You need a happy place where your life is like you always wanted it to be. But listen, you have to stop living in the past. The past is over. Your new life is scary and does not even partially look like what you imagined, but you always found new talents, and you will this time, too.

But you need to start seeing your future and planning your new life. This will be hard, but think about what you already achieved. You made it through four years of horrible symptoms and pretty much finding your diagnosis yourself. You can be proud of yourself, and even if you do not believe me right now, you will be happy again.

This diagnosis is not the end. It is simply the beginning of a different, but equally worthy life, and you will learn to be happy in a different way.

You will not expect it, but you will change for the better.

Just think about how strong you have been and what it takes not to give up. Remember how far you have come. You finally got your life-saving diagnosis, only because you did not stop questioning your doctors.

Your life will not be easy. There will be more challenges and you will feel like breaking apart. But listen, you are stronger than this.

I will now allow you to rest for some days. This was very exhausting for you. You will order your thoughts and cry about the life you have lost. You will be allowed to look back and grieve about all the things you cannot do anymore. But then you will see your future, and you will stand up and move right into it: your new life as a chronically ill person. I promise, you will be fine in the end.

woman with her arms spread out
Karina.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Woman With EDS Fires Back After Being Accused of Misusing Disabled Parking

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Cameron McMillin has a form of Ehlers-Danlos syndrome (EDS), and after parking in a disabled spot at Rocklin Elementary School in Rocklin, California, on Feb. 4, she received a rude note from a stranger who accused her of misusing her disabled parking placard.

The note, addressed to both McMillin and a friend, read:

It appears that you are both able bodied. It’s disappointing to see the misuse of that disabled placard here at Rocklin Elemtary. Please reserve this spot for those who are truly less fortunate than you. Thank you.

McMillin says the note reduced her to tears, so she responded with a simple yet powerful Facebook post (below) she hopes will encourage others to think twice before judging someone with an invisible illness. Ehlers-Danlos syndrome (EDS) is a group of connective tissue gene disorders, and symptoms include skin that tears or bruises easily and unstable joints prone to frequent dislocations, among other issues.

I think it’s my turn to say something. Hello. My name is Cameron McMillin. Today you made me cry, but that’s okay. I’d…

Posted by Cameron Mcmillin on Thursday, February 4, 2016

 

The post reads:

I think it’s my turn to say something. Hello. My name is Cameron McMillin. Today you made me cry, but that’s okay. I’d like to take this time to inform you about a medical condition that I have called Ehler’s Danlos Syndrome. It is a connective tissue condition that causes pain in my joints, muscles, and all throughout my body, dislocated hips, knees, ankles, and ribs, heart palpitations, organ problems, multiple surgeries, and many more. You have no idea what I go through every single day. I know you made a snap judgement by what you saw, but what you see on the outside is not what exists on the inside. My body may be weak, but I am strong. Next time please get to know a person before you make a comment like this. People who have Ehler’s Danlos Syndrome are never heard and I want to change that. It’s about time we gain a voice. ❤

“Rare disease and invisible disabilities affect many millions of us around the world,” Mark Martino, a spokesperson for the Ehlers-Danlos National Foundation told The Mighty. “The more we speak up, the more visible we become; and with visibility comes not only the respect we all deserve, but also the attention of researchers and doctors to the daily battles we are all fighting.”

h/t Metro

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The Awkward Question I Wish My Loved Ones Wouldn't Ask About My Chronic Illness

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This isn’t directed at anyone in particular, I promise. This is directed at almost everyone I know. You may think you’re being considerate by asking me if I’m feeling better, but it’s not as comforting as you might think.

It sounds normal: Someone who’s acutely sick should get better. But the nature of chronic illness is just that, chronic. Sure, we have days one could deem “better” than other days, but we do not magically get better. Unfortunately, there is no wand or spell that makes you feel brand spankin’ new.

You’re probably wondering why it’s awkward for me when others ask if I’m feeling better. Here’s the reality. When you ask me if I’m feeling better, I’m somewhat confused. It is such a vague question. What do people even mean when they ask that? Am I feeling better than I was 10 minutes ago? Yesterday? Three days ago? A week ago? Can I answer with “E,” not enough information? The reality is, the status of my health can change at the drop of a hat. One second I can feel completely fine — and then bam, the pain envelopes my mind like a plague or I have a rash all over my body. So I don’t think you really mean to ask me if I’m feeling better now. It’s too variable of an answer; it’s not really what you want to know.

young woman's snapchat photo

Although I couldn’t know for sure, I assume what you want to know is how I’m feeling. Am I having a generally low period or a generally high period? Am I getting out of bed and out of the house regularly? Or am I staying mostly in the house, sleeping a lot and spending a lot of time horizontally? Am I having a hard time staying in school, or am I able to balance my symptoms and my schoolwork?

I don’t like people asking me if I’m feeling better because if you ask me that at any given point, I’m almost always going to say no. I rarely see family members or friends during the day, and at night I always feel worse. The thing is, it’s not easy or fun to tell someone you haven’t been feeling better, because there’s nothing a sick person wants more than to feel better. Asking “How are you?” on the other hand gives me the opportunity to explain. It’s no longer a “yes” or “no” question. I can tell you today is a rough day, but yesterday was a better day. I was even able to stay out an hour longer than I expected! This gives me the opportunity to let my positivity shine through a difficult situation.

The last thing I want is anyone’s pity. After all, I wouldn’t be who I am today without Ehlers-Danlos syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), hypothyroidism, irritable bowel syndrome (IBS) and others (only some of which are diagnosed). So please understand that I will always struggle with chronic illness, and no, I will not suddenly feel better. But I do have days that are better than others, and I appreciate the heck out of those.

And although I do want you to understand what a day in my life is like, I would rather tell you about those days when I can counterbalance them with the good days. “How are you?” gives me the opportunity that “Are you feeling better?” doesn’t. Please help give me the ability to be positive.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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20 Ways I ‘Fake’ My Chronic Illness Symptoms

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I fake my Ehlers-Danlos syndrome (EDS) symptoms all the time.

Every day.

For as long as I can remember.

It is second nature; it’s why I am so good at it.

Now I don’t mean I’m faking the actual symptoms of my condition, making them up or exaggerating them. They are very real to me, and they are ever-present in my life. Quite the opposite, in fact — because of the invisibility of EDS, I have become a master at faking being “normal.”

Here are the top 20 ways I have learned to conceal my illness on a daily basis and to blend with the masses — to appear to be “normal.”

1. Smiling

I make a huge effort to have a happy life and try not to let things get me down. Just because I am happy while being ill doesn’t mean my conditions have disappeared. It simply means I have chosen to be happy in spite of my illness, which is no mean feat. I have mastered the “Fine, thanks” response when someone asks me how I am — I don’t believe anyone honestly wants to hear the truth! It’s important to be happy. It’s good for your health.

2. Makeup

I put my face on every single day. It is my mask for the real world and I like wearing it. Only those who know me well can tell how I am feeling behind the smile and the makeup, by looking into my eyes. Even if it’s just a bit of mascara and a sweep of blush, it makes me feel better about the day ahead, more human.

3. Ditching the Kettle

I have boiling water plumbed in because I can’t lift a kettle without a dislocation.

4. Holding a Pushchair

When my children were young, my mobility was at its worst. I would get out the buggy to hold on to when I walked along, even if the children didn’t need to sit in it. I would let them hold on and walk slowly with me while it held me up. I miss the fact that they are all too big for a pushchair.

5. Leaning Instead of Standing

Standing is hard work 1. because of pain and 2. because standing still makes me dizzy, and when things are bad I can be clammy, shivery, breathless and can even faint when upright. You will notice me just propping myself up on a table or a doorway.

6. Fidgeting

Sitting and standing for any length of time is uncomfortable and moving just helps. Fidgeting when I’m standing, calf pumps, fist pumps or squeezing a stress ball hidden deep in my coat pocket can also get the blood pumping to avoid me passing out.

7. Standing Up Slowly

Always, to minimize the head rush and dizziness.

8. Pacing Myself

I am driven; I like getting loads done, but I would find that I would push and push only to crash later. Pacing used to be my enemy, but I have had to work hard to make it my friend. All of my daily activities are paced and no one would ever know! It increases the amount I can achieve over a given period instead of feeding into the boom-and-bust cycle.

9. Hiding Fatigue

You can’t see fatigue, unless you know me well, and on the days when my fatigue is at its worst, you won’t see me at all because I physically cannot get out of bed or leave the house. My life is planned 24/7 to manage this element, but sometimes it creeps up on me and catches me out. I have collapsed before, unable to put one foot in front of the other, and been rushed to hospital. People won’t know or understand how bad this can get because they just wont see it.

10. Managing Pain

I have become an expert at hiding my pain (and I have a pretty high pain threshold), and you won’t see the amount of medication I take, the ice, wheat cushions, massage, hot baths, propping my joints with anything just to get comfy. I am a master of disguise, too. I can be standing, smiling and chatting with someone with a rib subluxated, unable to relocate it, and unless I knew you well I wouldn’t even tell you!

11. Planning

If I do have something particular to do on a certain day, then an immense amount of planning goes into it. I was still paying for a Spooky Walk for Halloween a week later in terms of pain and autonomic dysfunction, because I had a meal out two days before and didn’t plan enough time for my body to recover in between.

12. Avoiding Obstacles

This has become like second nature. This time of year, just walking to the car there are obstacles. The blanket of autumn leaves may look pretty, but in the dry they mask the unevenness of the pavement beneath, and in the wet they are slippery. I always walk around things where I can or take another route.

13. Wearing a Vest

I have the ability to stand in 30 degrees Celsius heat in the summer and still have goosebumps. I wear a vest all year round. I’m also fond of a scarf, gloves and hat.

14. Orthotics and Braces

These are hidden in my shoes, under my jeans. Unless something visible like my wrist or thumb is braced, you would never know. There was one time this year my ankle was in fact braced, as it was subluxated and wouldn’t relocate. A mom at school spotted it and questioned if I was wearing a tag! What she didn’t notice was the excruciating pain on my face as I had to bear weight — I have learned to hide it so well.

15. Tight Clothes

Skinny jeans aren’t a fashion statement for me; they are a necessity to hold my hips and pelvis in place and increase proprioception to my joints.

16. Eating Well

Eating small, regular meals helps me manage a whole host of gastro and autonomic symptoms, as does eating gluten-free. If you went out for dinner with me, would you know by my choices?

17. Being Vague With Plans

This is another one of my coping methods, I can never tell how I will be feeling from one day to the next, let alone a week or two in advance, so I tend not to make definite plans unless I have to.

18. Linking Arms With a Friend

To steady myself perhaps because I’m hurting or if I’m walking somewhere tricky with slippy leaves, a wet floor or if it’s icy.

19. Seeing Friends

Making time for a regular cuppa with friends to chat about anything else but EDS, health and hospitals.

20. A Sense of Humor

This is so important when faking being “normal.” Being able to laugh at yourself and having the ability to look back on situations with a smile (because there are many) is a must.

So when someone calls me a “faker,” in a way, they are right. I have become a master at concealing EDS to just live. It’s my life, and I am going to make the most of it and will not apologize for that. EDS is a huge part of who I am, and it never goes away, but I am committed to working hard so it doesn’t become all I am.

Black and white photo of the author pointing toward herself
The author, Sarah

Follow this journey on My Stripy Life.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What You See and Don’t See About the Woman in This Photo

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People are really quick in making up their own story for a picture, for people they see.

You see a young women happy at a beach. You would probably think this woman has a great vacation on one of the most beautiful places in the world. The sun is shining and the waves are moving to the sound of the wind. Lots of people dream about a beach like this.

Karina walking on the beach
Karina walking on the beach

Some people would get jealous and think this woman does not deserve a vacation like this. They would even judge this person because she isn’t working and says she is chronically disabled but still can go out.

I am the woman in this picture, and this day was one of the most beautiful days in my life.

Based on some people’s opinions, people like me with many conditions are supposed to stay in bed all day and feel miserable. Because that’s how we might imagine someone who is not able to work. Quickly we might decide that people fake their disease if they look healthy on the outside. If we stay in bed all day, we are called depressed; if we go out, we are called fakers. It is hard to stay positive around those opinions. Then there are pictures of me on a beach lots of people dream of, and there is no more empathy at all.

Let me tell you what you really see in this picture. You can see me, a woman who suffers from Ehlers-Danlos syndrome and many co-morbidites. A woman who fights for her life every single day. To be able to keep my strength, I need to have a stress-free day, which means every now and then my mind has to relax and see beautiful things. This is necessary so I can survive the never-ending fights. What you cannot know is that this one day when I try to live a normal life means five days of staying at home being severely exhausted and in pain. But this one day is worth every second. It is absolutely necessary to be able to enjoy things, to have a vacation from fighting. Those days do cost a lot of energy, but they give me a feeling of normality. Being able to pretend a normal life is worth a lot to me and weighs more than the pain and suffering after.

You cannot see that during the day when this picture was taken, my stomach cramped due to mast cell issues; I was not able to see a lot, thanks to my cervical spine instability; and I could not walk properly due to instabilities in most of my joints. But I was the happiest me in a long time.

What does this beach mean to me? This beach means freedom, it means independence, it means living a normal day. It is a place where my mind just stops thinking about all the problems I am facing. Listening to the waves, putting my feet in the cold water, hearing the birds singing and seeing the sun shining gives me more than anything else in the world. To see how strong and unpredictable the ocean is, it’s overwhelming so I can forget all worries for a short amount of time. And I believe this is exactly what chronically ill people need. A place to feel save, to feel free and to let go the heavy burden they usually bear on their shoulders.

The next time someone judges me because of a picture, I want everyone to really think about what it means to me. Do I maybe need this place to keep my spirits up? Do I sometimes feel like giving up and need a break? Do people with chronic disease not deserve a day outside?

The worst part is even if I know I need those days, I find myself asking if I really deserve it, if it’s better to stay at home just in case people see me. I do not want to be seen as happy just because I am afraid of being called a faker or a liar again. I am scared people will tell me I am not really sick because I am still able to enjoy a beautiful day. I even feel ashamed for still having the chance to see all those places. It hurts a lot to live a life with those judgments.

I am sitting between two chairs, the expectations of others and my own needs. I am struggling with what I need to stay strong and what other people think I should do. Our lives are hard enough without prejudices. I wish people would see this picture as what it is: My escape from being sick. My chance to survive. My best therapy.

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