How Ehlers Danlos Syndrome Impacts My Life | Heart To Heart

Thankful for your honest, heartful sharing. I'm an old RN just learning about all of this at 70, but it helps me understand why I had so, so many problems my whole life, and now. As nurses we study only a paragraph in nursing school about it, but in my 44 yrs I never saw EDS treated as a real clinical issue, or differential diagnosis to be considered for this huge population of chronic pain/disability. I was even told that I was lying about my back pain because I'm flexible, etcetc. It's only been the Physical Therapists who have educated me and legitimized all these constant issues. Wishing you the best! Thanks

Dif-abled- sounds like a perfect slogan for - t shirt and hoodie

Hi! Fellow zebra, thanks for sharing!

Zebras unite!! punches up in the air sarcastically enthusiastic I appreciate your story. EDS is rough.

My wife and son has eds. I feel for you! I do all the gardening. 😊. Be well!

I know that this video is a year old, but I was really moved by your story and I deeply relate to your experiences as another person with a connective tissue disorder. I would love to homestead with chickens and randy roosters like you're doing, that sort of choice takes so much courage and dedication. I just want to tell you that being a disabled person doesn't mean that you can't do many things. I have a connective tissue disorder, I'm blind, and I'm severely immunocompromised, and I can do a lot of things, too! I'm a ballet teacher, I dance, I write, I cook and clean and take care of animals and I'm a great wife, just like you are. To me, being disabled is acknowledging that our culture didn't have people like me in mind when different systems, structures, and institutions were developed. Schools didn't think of me, employers didn't think of me, hospitals didn't think of me, and yet, here I am, existing as myself, living as myself as best as I can. There are a lot of really detrimental stereotypes about disabled people out there that keep us from self-actualizing and being our best selves. Don't be scared of the word disabled; it's a word that reminds us that the world could be a better place, and that if we maintain our solidarity and support each other and ask for change, we can and should do that. All my love!

I completely understand, I have eds, mcas and pots, and i deal with all the same issues, and I work construction, buy I feel that I'm reaching the point that either I need to go on disability or a job that isn't physical demanding, because my recovery periods are becoming longer and longer, I am only 43 but I have already had a back surgery, carpal tunnel surgery on both hands, lost all my teeth at the age of 27 because they became so brittle, my knees feel like they are grinding and shooting pain all day long, elbows sting alot the time, hands struggle with tasks because of the pain, pain in my neck, hips feel like pop out place and gurt so bad majority of the time, legs hurt after standing for only 3 min, and long list of other issues. What bothers me the most, is I past this onto my children. I hope the best for you and your not alone, your not crazy, I know exactly how you feel.

Thank you for sharing your story. My children have EDS and they all 3 experience lots of pain and have some issue that you talked about. Its a relief to hear you speak of some of the things that cause you issues, because now I can understand what and maybe why my children are feeling the pain. My daughter always wakes up complaining of severe pain from sleeping wrong. They may walk the wrong way, or trip and have dislocated joints. My son is the one that is suffering the most with the pain and I haven't found a doctor who will treat his pain yet. They have to do online schooling because of how much it affects them. I feel judged and shamed at their school because they make comments or remarks hinting that I am exaggerating their pain and physical mobility issues. If only they really knew what we endure daily. It's rough. Thanks again for sharing and I'm so happy that you finally got validation. Now you can stick your middle finger up at all those people who made you feel crazy! Stay strong. Sorry to talk so much. I'm just so happy I came across your video. I'm going to share with my children so they can see they are not alone.

Hi, i have hEDS as well and I'm in graduate school to go into agricultural education. It means a lot to see another zebra in agriculture. I also used to play softball (through special olympics) and while i never was a catcher it was definitely rough lol; softball amd basketball required a lot of pivoting on some not so happy knees. Best wishes!

I have eds as do all three of my kids to some degree My daughter has the shitty vascular one, nearly bled to death twice and has had three surgeries so far. She and her wife are having baby number two. She’s trans so she’s not pregnant. Watching your video was cool and encouraging me to do my own. We need each others stories don’t we? I lived with my ex for twenty years and thought I was lazy etc etc, your chat gave clarity to why I’ve always believed I’m lazy. I’m sixty four and just learning all this. Bless, aren’t you blessed you learned so young and have such a wonderful wife. Crying now and obviously feel encouraged to get up and take the dogs for a walk. With a cane today I think cos I nearly fell yesterday and strained my neck, shoulder, arm, wrist and fingers and a knee. Thanks so much, I’ll look forward to seeing more x

This is so relatable.. Thank you for sharing your story, makes me feel less alone in this ❤

What you said about everything you do being a careful balancing act!!! I 100 relate. Do you have lung/asthma issues too? I have exercise induced asthma along with my hEDs and everything else and I HAVE to pace myself or I will literally be dead to the world in a vegetative state until I come back to life. Great channel ❤

Although I'm nine months late on this video, you just got a new subscriber. I'm about thirty years ahead of you on my hEDS journey (spoiler alert: It doesn't become more fun), having already done the old fixer-upper and homesteading. Some of my favorite memories are working in my big garden and just being in nature. It looks as if you have a gorgeous spot there. I look forward to seeing what you get up to in the future. I hope your pain levels are low and your spirits stay high.

Thank you so much

So sorry to hear how much you hurt 😢.

OMG That is so funny I actually partially tore my ACL IN MY SLEEP!!!! Same as how you described waking up with severe injuries from sleeping wrong!! I didnt know this happened to other zebras too. Have you considered sleeping with any sort of splints/supports? Someone recommended compression sleeves to me as like, a type of splint that wouldn’t be too invasive for sleep. And OMG the complaining about pain when young thing— spot on. I felt so weak but actually our pain tolerance is probably way too high… I am glad you got a diagnosis but I hope you can see some quality of life improvements soon.

Also, I've also joked that we who have hEDS are mermaids lol. We do well in water but not so much on land lol. I'd have gone with a mermaid as an icon ver a zebra any day lol.

I can relate unfortunately. I have TNXB type. Can definitely be a daily challenge. Thanks for sharing. 😊

You’re very brave to speak about your illness so publicly and I thank you for your courage. My bestie has what you have. I can’t relate and I don’t understand well, but I want to be helpful to them. This video brought me to your channel and I’m enjoying all your content. I wish I could say something encouraging or insightful but I’ve never been in your position. Just know that as you go through these difficulties there are others who do share your condition and they understand. Also, it’s ok to not be ok. You have a sunny disposition that we all enjoy but don’t feel compelled to be happy on my account. You do you, and I’ll be right here.

why did i get recommended this from a sewing video... well i watched the whole thing and it was a good rant. and your farm is cool. take care of the EDS community and broader chronic illness community. the meek shall inherit the earth.