Ehlers-Danlos Society

Join the Conversation on
Ehlers-Danlos Society
3K people
0 stories
66 posts
About Ehlers-Danlos Society
Explore Our Newsletters
What's New in Ehlers-Danlos Society

Too much thinking #AutismSpectrum #EhlersDanlosSociety #EDS #Depression

I had surgery in December and it has come with extra drama that it taking all of my brain power and has made my anxiety and depression flare its horrible self. I dont do change very well. My boss left to another job so I have to get used to the idea of having a new person in my office , I was getting ok to that idea but now we are getting more new people and some will get put in my office. I am trying to rearrange my office to add them in and it is not going well in my brain every time I think about it and try to figure out my office it makes me anxious I dont have energy to deal with this. And I can't exactly tell my super boss no I have an office that is too big for the people that go in it anyways but it's really bugging me I guess it's better than me completely changing to a smaller office and at least I shouldn't have to move my little space. This is dumb that its bugging me so much.

7 reactions 2 comments

I'm new here!

Hi, my name is StretchySam. I've been diagnosed with a number of things in my life, while also being blown off by many doctors, finally leading to the diagnosis of hEDS. I am still awaiting my genetic testing for any overlapping disorders, or EDS types, as Hypermobile EDS is a clinical diagnosis. I am hoping to find a community of people who understand what it's like and to, hopefully, be that for others.

#EhlersDanlosSociety #Fibromyalgia #Anxiety #Migraine

8 reactions 5 comments

Shame wearing a back brace

I am feeling a lot of shame and internalized ableism after finding a sense of relief with my back brace. I immediately felt cinched in and relieved the micro movements in my spine the moment I strapped my brace in place.

Although, I felt happy and hopeful about finding a non-medication form of pain relief. Dealing with the hate and skepticism of an invisible illness and having people gaslight me and tell me I am too young or look "able" enough to wear a brace. Sent me off to a PTSD rage fit where I almost destroyed my brace and assistive devices altogether.

I felt like I wasn't ready to be in public and have people focus on my back brace. Or dealing with the pitiful looks. Why do I feel shame after feeling happy I gained more spoons.

#EhlersDanlosSociety #ChronicPain #PTSD #InternalizedAbleism

45 reactions 11 comments

Food for thought!

Some know my history (somewhat) and some might not. I wanted to share something I believed going into the rehabilitation center; for drug abuse and domestic violence, that we as humans can change our way of thinking by ; "rewiring our brains "! Example: drug addiction, avoiding people, places and things that remind us of our using days. Essentially you're rebuilding new positive habits. Which also means, we are changing the way we think, "rewiring our brains ". As far as my C-PTSD, I had to face my triggers in a safe environment with people I trust. This over time reprograms my brain to see that; my head being touched doesn't necessarily represent danger or future trauma. Essentially, replacing memories of bad touch with memories of good touch. But again, I had to rewire the way I looked at many many different areas of my life. My Motto now is: "Come What May". Either way I refuse to allow stress come back into my life. Whatever is coming my way whether appointments, family, or financial issues, I refuse to stress over it. It's going to happen anyway so I don't need to add and negative emotions into the mix. All that would cause is for me to; allow my mental health be impacted, cause headaches, blood pressure elevated. All things I avoid. My toxic abusive relationship with my ex was 14 months long. I fell in love with the lies he told. It took me a long time to see that it wasn't truly the man I was in love with. By the time I realized I needed to get away before one day he killed me, it was to late. He suspected something and never left me alone. I also believe there is a silver lining in every situation we just have to be patient to be shown what it is. My silver lining is that; I am a survivor and in being one have been able to heal enough were I can share my story and help others just beginning their healing journey. Also, that relationship taught me what I honestly value in my life, and What I will no longer tolerate. Example: my daughter has always been sort of toxic in the way she talks to or acts towards me. But also, I've always been her best friend and I've supported her in her life choices. She also gave birth to my three grandsons. But recently, I've had to place her out of my life because of her toxicity towards me. Yes it's causing added depression but I remind myself that with her gone, missing her and grandsons are less overall stress than having them in my life.

Sorry, if I've gotten off track. I probably have cause I forgot where I was going. But as our biggest advocate for ourselves, we need to take the steps that is "Best" for us and not just going along to keep the peace! Document any symptoms new or old and keep notes so we can actually show doctors what we are struggling to remember or put in words. If we don't feel a certain doctor isn't helping, we have the right for a second opinion or to find a different doctor. Asking around for recommendations. Find several hobbies; trust me, I need several cause my body reacts differently to different activities. So I have to switch them up periodically.

May everyone reading this have God's Devine blessings and be able to accept what life has given you. Embrace it, learn from it so you too can share "your life experiences " with others

#EhlersDanlosSociety #Life with C-PTSD #mighty Art Room #lift Me Up #Chat Space# Distract Me #RapeSurvivors #MentalHealth #Conquor Your Mind #emotional Abuse Survivor #no Shame

8 reactions 3 comments
See full photo


Hello all! I am Emily. I have followed many people and read stories on The Might but have never really interacted, but I think today that all changes. One reason for this change is I had encountered with The Lord and he brought much needed comfort and healing of my heart mind and spirit. Now I am making the choice to speak out on my struggles and to help others struggling with chronic illness and disability encounter the healer and comforter Jesus Christ. I am a poet, author and artist using my gifts and burden for the benefit of others and the glory of God.

# Christian #ChronicIlless #EhlersDanlosSociety #EhlersDanlosSyndrome #EhlersDanlosSyndromeAwarenessMonth #ChronicPain #Disability

10 reactions
See full photo

What’s been your experience with patient advocates?

Navigating the health care system when you have a condition like EDS can be challenging and overwhelming sometimes, especially when met with others who aren’t as knowledgeable about what it’s like to live with your diagnosis.

But sometimes, seeking assistance from patient advocates who are educated and willing to put in work to get you the help and treatment you need is invaluable.

What have your experiences been like with patient advocates? Did you find one that was helpful to you?

✅ Want some insight from a personal experience? Check out what ChristieCox has to say in recent Mighty article here: 10 Tips for Finding an Ehlers-Danlos Patient Advocate

#EhlersDanlosSyndrome #RareDisease #Hypermobility #EhlersDanlosSociety #ChronicIllnessEDS
#HypermobileTypeEDS #ChronicIllness #ChronicPain #Spoonie #Fibromyalgia
#MentalHealth #Anxiety #Depression

10 Tips for Finding an Ehlers-Danlos Patient Advocate

Find someone who understands your struggles and can offer support, advice, and a healthy dose of humor.
6 reactions 3 comments

Finding a Dr.

#EhlersDanlosSociety #EhlersDanlosSyndrome

Does anyone know of a resource to help you find a Dr. in your area that is versed in EDS or know of one in the Dallas/Fort Worth area?

I've had non-severe yet still very present symptoms indicative of EDS my whole life, hypermobility, joint instability & popping, chronic pain, bowel issues, stomach pain & acid reflux, white coat hypertension, etc. All recurrent problems for me, but not urgent enough to motivate a Dr. to be terribly concerned or help with a diagnosis.

I know a diagnosis doesn't change much in terms of playing whack-a-mole with managing symptoms, but I am recently married, and in the next couple years will explore the possibility of trying for children, I would like to have EDS on my medical chart as I know it can be a risk factor for pregnancy/childbirth and would like to make sure this is considered with how I navigate that journey. I would also like to raise awareness among medical professionals for future people struggling with this. Hopefully they don't have to go as long feeling crazy like I did before getting some answers.

3 reactions 5 comments

Looking to do some research

Quick question. Do any of you have sites that you have gone to that give information about EDS? I was recently diagnosed and I want to research on it so I have a better understanding of what it is that I am now dealing with. #EhlersDanlosSyndrome #EhlersDanlosSociety #Ehlers -danlos #hypermobileehlers-DanlosSyndrome(hEDS)

13 reactions 4 comments