Ehlers-Danlos Society

People's Advocates for Total Health works to provide advocacy and connections to better health in communities across the United States. Our original focus was Ehlers Danlos Syndrome, but we now support doctors, coaches, advocates, and educators in supporting invisible and chronic illnesses in every way possible. Right now we are spearheading a fundraiser to provide 300 families with genetic testing for EDS. To donate or find out more, reach out or go to www.path2betterhealth.org. #MightyTogether #Dysautonomia #Dysphagia #EhlersDanlosSociety #EhlersDanlosSyndrome #chron #PolycysticOvarySyndromePCOS #InflammatoryBowelDiseaseIBD #Infertility #LymphomaNonHodgkin

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.

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

Just wondering, does anybody know of counseling? 1 on 1 that specializes in chronic illness patients. #ParkinsonsDisease #EhlersDanlosSociety #MentalHealth #PeripheralNeuropathy #FunctionalNeurologicalDisorder

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

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

Hi, my name is Anon75. I'm here because

#MightyTogether #Anxiety #Depression #Fibromyalgia #Migraine #EhlersDanlosSociety