Living with Ehlers Danlos Syndrome is Like...

 One of the hardest things about having EDS is trying to explain your symptoms and the way that your body feels. EDS patients are typically not listened to, believed, diagnosed correctly or treated correctly. Not everyone's symptoms are the same, which is why it makes it so hard to diagnose. 

 One of the best things I have gained from my diagnosis is the amazing people on the online support groups, people from all around the world can help support and educate each other. 

 Personally, for me, EDS feels like I am constantly drowning. It's like when you are in the ocean and a wave knocks you down and before you can get up and catch your breath another wave is already there to knock you back down. 

 It's terrifying knowing that your pain will never go away and it will never get better. You can't trust your own body. It's a constant battle of what I want to do and what I am able to do. It's not just living with the pain. It's living with the shame, the guilt, the depression, the hopelessness, the misunderstanding, the judgement, the embarrassment, the betrayal of your body, and the self hatred. 

I had some of those people write about how EDS feels to them.

Here is how other people describe their EDS...

Tony Michelle Adams "It feels like shredded muscle after I used to do a heavy lift day at boot camp... Only now that pain and weakness is daily, the muscles never seem to heal and I have hundreds of trigger points the size of marbles throughout my body"

Deborah Searle "I watch my husband recovering from the anesthetic he had from a major op the other day and I realized that is what I'm like on a really bad fatigue day. Not able to stay awake can't think forgetting my words etc!"

Susan Newcomb "My daughter describes her full body pain like the throb you feel after you stub your toe."

Jocelyn Joy "After listening to my friends describe being pregnant, I realize I feel pregnant every day."

Lindsey Bertagna "Whoever has the voodoo doll of me is running out of places to stick their pins!"

Brandi Fickling "It feels like I stayed at the club all night drinking and dancing til 4am every night, but I didn't. I watched Netflix and fell asleep at 10."

Holly Sayers "It feels like the day after a marathon you ran and completed, but never trained for.....indefinitely"

Suvi Andersson  "When I lie down it feels like my pelvis breaks down into small particles and spread over the bed. When I need to get up I must first collect all those fragments and ask them to please hold together before I can rise. After a while I hear the distinct pop from my shoulder, dropping into place. I have to sleep on my side which means my shoulders collapse and fall in on eachother, pressing on my throat. Going to bed is not that restful when you need to plan your every position and prop your limbs up. And every time you need to move you have to wake up and rearrange your body. It can take a while to find a position that will work for most body parts. Many nights I can't fall asleep at all."

Stacie Lou "Yesterday is always better than today. My doctor has told me I have the body of a 70 year old...I'm only 21!!"

Jocelyn Joy "It feels like I have miniature lead balls hanging from each individual muscle. It feels like my body is a ball in a pinball machine because I bounce off surfaces all day long. I feel like a social outcast because I cant do things that others can like running and skiing competitive sports or having a drink at a bar in the evening. I feel like an overachiever because I have to work twice as hard to show people I'm not lazy. I feel like a sensitive flower because I have to be so careful that the environment I'm in isn't too loud, or bight, or cold and I have to avoid all kinds of food to not exacerbate my symptoms. No gluten, dairy, sugar, coffee, alcohol, or grains. Pretty soon I'll be living off air and water and Himalayan salt crystals."

Caitlin Bignold "I wake up feeling like I've just walked a marathon"

Joey Killian-Major "It feels like being an invisible hurricane!"

Amanda Kate Forsythe "It feels like trying to wake up after a restless sleep, only to realize that someone has been taking a sledgehammer to your shoulders and hips the entire night."

Lindsay Prososki Lee "I hate the fatigue more than I hate the pain. I feel like I'm only half alive."

Aubrie Williams "You know that tired feeling you have when you wake up at 2AM with the groggy eyes and headache? It's kinda like that all the time. You know the sore muscles you get when you haven't exercised in a long time and you hit it hard at the gym? It's kinda like that all the time. You know when you're sick with the flu and you've been in bed for a week and you feel weak and hot and dizzy when you stand up? It's kinda like that all the time. You know that tired sore feeling after a car accident when all your muscles are screaming from the trauma of being jerked around and you ache all over? It's kinda like that all the time. You know how you feel when you wanted so badly to do something with your friends and something comes up and you hate that you have to cancel? It's kinda like that....all the time."

Michelle Wilkinson "The worst pain EDS causes, is when a loved one doesn't believe you."

Linda Alcock "EDS means our bodies constantly battle themselves so because of the level of pain our bodies fight our energy levels suffer the less energy the more fatigue the more fatigue and pain the harder it is to function or have a good sleep it's a vicious cycle"

Tammy Wild "Like when you go to the gym, and do a stretch and hold it for 30, and feel it burn and pull and psych yourself into keeping going, until you just can't stand the muscle pain anymore, and release. Except you can't ever release."

Meshell Lynn Bergeron "I feel as if I'm drowning in a pool without being saved or suffocating. Just a never ending struggle to survive."

Chloe Downes "Your joints are so fragile it's like walking on noodles,one wrong move can cause lasting damage."

Marianne McNally "feels like I have lost my liberty" 

Johanna Hinch "Like walking through quicksand. The you move, the more you get sucked in."

Emily Rose "Ignorance is almost worse than the pain, for me. When someone is just so cruel to you because it's an invisible illness it really makes you feel much worse about yourself."

Jessica DeLuna "It feels like trying to stand on the sandy ocean floor with waves crashing down on you."

Kim McDougall "I think one of the hardest parts about EDS is that is an invisible illness. People, even family, don't really believe that I can be in pain or exhausted all the time. It must be my fault somehow. Like I don't get enough exercise or I don't eat properly. So I stop complaining about it and that leaves me feeling isolated"

Rebekah Bears "It feels like I'm dying, even though I know I'm not. I'm alive, but I'm no longer living."

Sonja D Simmons Long "Just like the stretch marks from pregnancy and those scars my internal organs are pulling apart. I can feel it happening daily."

The Truth

Everyone who knows me knows that I am a workaholic. The last few months I have felt my health decline. I thought it was just a flare up, I am now accepting the fact that this is my new reality. 

This month is a new change for me. I made the decision, after months of going back and forth, to go part time at Wayfair. This is never something I wanted to do, but I am not physically able to keep up with my "normal" routine anymore. 

Although I know it is the right decision for me, I feel myself becoming the person I told myself I would never be. 

For the longest time I have been too afraid to be honest about how EDS has changed me. But here it goes. 

I am scared to be honest when people ask me how I am doing. I am scared to say "It's getting worse" or "My health is scaring me". People always ask "Are you feeling better?", my automatic response is "Yeah I'm fine"or "Nothing I can't handle". Or sometimes I'll even make jokes to hide my pain. Truth is, no. No, i'm not feeling better. No, i'm not fine. No, taking a day off work did not help me feel better. No, the pain is not something I can always handle. 

Truth is, I am exhausted. I am so tired of fighting the pain. I am tired of feeling and hearing my body pop and shift out of place every time I move. I am tired of putting a brave face on to make those around me feel better. I am tired of all of the doctor appointments. I am tired of limiting myself. I am tired of all of the tape, braces, physical therapy, x rays, MRI's, blood work, EKG's, and surgeries. I am tired of hearing "You are too young to be having this many health issues". I am tired.

I can feel myself breaking. Piece by piece. One body part after another.

I don't get a break. I don't get good days. I don't get relief from the pain. I don't remember what if feels like to walk without pain. I don't remember what it feels like to sleep without difficulty. I don't remember what it feels like to dance without pain. I don't remember what if feels like to be well rested. All I know now is pain.

All I can do at this point is take it one day at a time and hope that in the future someone will find a way to stop this painful illness.