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17 'Scary' Aspects of Ehlers-Danlos Syndrome We Don't Talk About

Having a chronic illness can be scary – you never know what symptoms each day may bring. When that illness is Ehlers-Danlos syndrome (EDS) though, the uncertainty can sometimes be unbearable.

EDS is much more than the stretchy skin and subluxing joints that most people hear about. Since EDS attacks the body’s connective tissue, it can seem like no body part, or system, is safe.

Thus, EDS can cause a plethora of symptoms – some more “taboo” than others. Along with these physical symptoms can come fear. When you have a chronic illness, and your body doesn’t feel like your own some days, the fear and anxiety can sometimes seem never-ending.

Since this is a lifelong condition, finding ways to cope is key to your well-being. That is why we asked our Mighty community to share one “scary” aspect of Ehlers-Danlos syndrome they experience and how they cope with it. If your EDS ever causes you to be scared, know you are not alone.

Here is what our community shared with us:

1. “The fact that it progresses! It’s hard to think about the fact that this might be as healthy as I’ll ever be. And that my health may continue to decline. I cope by reminding myself [of] the many blessings I do have, such as my family’s support. Also, I pray.” – Cady B.

2. “The depression that comes with a diagnosis of something incurable and so painful. Knowing that I’ll never be better than I am at this moment and being terrified I won’t be able to continue dealing with the pain.” – Hope S.

3. “Your doctor telling you to come in if you feel a 10/10 on the pain scale but you live at a 6/10 and you’re not sure if you’d pass that pain off as just ‘something that happens.’” – Eryn C.

4. “My skull and upper vertebrae used to dislocate and pinch my brain stem/spinal cord. They called it internal decapitation. It would cause diaphragm paralysis so I couldn’t breathe, it would cause fainting and seizures, and the seizures would knock out other parts of my body. I had to have six spinal fusions and a skull fusion over the course of five years. The scariest thing I’ve ever experienced was being awake and not able to breathe. The best way for me to cope was to focus on staying calm. And for long hospital visits in between big surgeries I used to color nonstop. Drawing and coloring was my best coping mechanism. I ended up turning my drawing into a tattoo design business!” – Kylee P.

5. “The fear of not being taken seriously by a professional who isn’t educated in EDS, or friend/family member/etc. not believing you. That’s just as painful as the syndrome.” – Chelsea C.

6. “It’s the pain for me… it keeps getting worse with age and I’m scared about the fact that I could possibly be completely unable to be independent due to the pain. When I have bad flare-ups, I cry not just because it hurts but because it’s scary.” – Haley T.

7. “The unknown. Not knowing if I’ll be able to get out of bed or make it to my appointments. Not knowing if I’ll be able to function or if I’ll be completely incapacitated. But knowing I have people to help me and support me keeps me going.” – Maria K.

8. “The scariest thing is when medical professionals do not have a working understanding of the disorder and use Google in front of you and/or assume that because a few cursory tests returned negative that symptoms are being exaggerated.” – Beth H.

9. “Falling and injuring myself or dislocating a joint. I always make sure I have my phone on me at all times because I never know when I may fall. I worry that if I ever live on my own I could fall and wouldn’t be able to get to a phone or help due to a dislocation or serious injury.” – Melissa B.

10. “Ehlers-Danlos can be scary, because it is lifelong and progressive. I will have this until the day I die. I deal with it by talking about it, [to get] it off my chest and to advocate for others. I try to find the positives. How could we appreciate or even know the light, without darkness. And I believe life is a beautiful disaster, but worth the pain of living.” – Breezy N.

Want to connect with other EDS warriors? Download our free app to more easily ask questions, share your experiences, and receive support.

11. “I don’t know what is EDS or what is an emergency. I end up in tears not knowing if I should go to the hospital and wait for hours to be told I’m fine, or to stay home and find out later that I should have gone.” – Aimee V.

12. “Dislocating a rib. It’s incredibly painful, feels like you’re having a heart attack. To get a rib back in I have to do some weird-looking yoga and hope I don’t dislocate something else while I’m trying to fix the first one.” – Reese L.

13. “It is terrifying to feel like a ticking bomb, never knowing when or how things will blow up. I was finally diagnosed with EDS last year at 39 years old. At least ‘it’ has a name now… one that I can offer the next time something blows up. That’s a step in the right direction… and I try to take comfort in that, even though I know there will definitely be a next time.” – Erin W.

14. “The noticeable deterioration even over a few months at times, noticing that you’re starting to walk differently knees knocking together at every step, the growing list of diagnoses that are sometimes quite frankly terrifying and wondering if EDS might take away your dreams, but fighting it anyway because that’s what you do, because I won’t stop working towards them.” – Jerrica J.

15. “The fast, unpredictable, uncontrollable progression over the last few months. In a matter of three months I went from my EDS being ‘background noise’ and being able to walk long distances to having a [disability] spot. It has been terrifying to know this is progressing, that it will never get better, and to not be able to stop it. I am a big fan of using humor to cope, and will make jokes about it when I can. Other than that, self-care is crucial. I also always want to raise awareness so I have been writing about my experiences as much as I can.” – Alex F.

16. “To say it simply, my GI tract is failing due to severe GI dysfunction all stemming from comorbidities with my EDS. It’s a scary thought. How I’ve dealt with this is simply talking about it with my close friends and family. We know that TPN (fed via the veins through a central line) is in my future. I’ve learned through time to take everything one day at a time and to live happily because there’s nothing I can do about it. It is what it is and I can’t change this. You just have to accept things the way they are and continue to move forward.” – Sydney J.

17. “When my worst fear is that I am alone in this, here you all are. We really are the mighty!” – LaurieAnn Y.

If you struggle with fear and anxiety because of Ehlers-Danlos syndrome, you’re not alone. Below are stories from our community on coping with several of the most common sources of fear EDS warriors face.

How Ehlers-Danlos Syndrome Influences My Anxiety

Facing My Fears as a Person With Invisible Disabilities

Fearing the Uncertainty of My Future With Chronic Illness

Why People With Invisible Illnesses Fear the Emergency Room

12 Things You Can Do to Fight ‘Flare Fear’

Why Disease Progression Can Feel Overwhelming – Even If You Were Expecting It

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