Monday, May 23, 2016

The Website The Mighty Is Helping Me Explain A Little Bit About What Having EDS Feels Like

NO, This is not all in your head!!!  If you have or think that you might have Ehlers Danlos Syndrome then don't let those around you who are not inside your body and not feeling what your body is feeling tell you that the things going on with you are not real. Of course no one else can be inside your body and feel what you feel which is the point that I am trying to make to hopefully help you feel like you are not going crazy. So many things hurt and are out of balance and wack or whatever you want to call it when you have EDS and it seems unreal to those who are not suffering with it as a matter of fact, it seems unreal to those of us who are suffering it. I often find myself saying that if I lived on a planet full of people who had EDS that I would be completely normal but since I don't I have to look at things with different eyes than the average person. Knowing this, on some days, is more than half of the battle of just getting me through the day, and sometimes just through the hour.  Having others like myself to depend on helps in lots of ways and being able to describe how living with EDS feels so that others can know what I'm going through really really helps me feel part of a community these days. I often don't feel part of my regular community anymore and feeling isolated is once of the first steps to depression for me.

I was looking for something to help me explain to others and I found a great site called The Mighty its a great place to find support and information about being disabled and finding others who are dealing with some of the same issues that you do if you were to find yourself on that list.

Here is a post they have that has helped me feel better about myself and my situation.

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

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

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

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

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

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

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

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

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

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

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

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

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

22. “EDS is feeling ‘insane’ for years because people tell you there is nothing physically wrong when youknow 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

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

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

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

Some answers have been edited for brevity and clarity.

Elisabeth Brentano

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