Do any of you ever feel alone Like no one understands you and that the few ppl...

%d comments
  • I can tell you this, if you feel alone, you need to do something about it. Feeling connected, accepted, and known is important for your mental health. It doesn't matter how you get that feeling of understanding, here, family, friends, counseling... but it does matter that you do - you deserve that much and more.

    As for your boyfriend, that's complicated. No one can completely understand what is like to be in your specific body but if you're feeling dismissed or he's feeling resentful, relationships are hard as is chronic illness. If he can't meet you halfway, no matter how much you love each other, you'll grow to be miserable. So really think on that and decide if he's supportive and good in your life and if he brings more happiness and love than sadness and frustration. I've been with men who may didn't get it whom I have loved with all my heart and it crumbled. I am with someone now who is moving in tomorrow. He gets it when he can, and knows when he can't but I've never felt misunderstood or disbelieved by him which is important in a relationship. I don't know what your feelings are or the specifics of your relationship, but if there's anything less than bliss, it's not enough. You can be angry with each other and argue of just not see eye to eye but you should feel loved completely. Talk things out here, with friends, whoever and explore where your feelings are coming from and if you don't have anyone to talk to, talk to me :) I'm only a pm away

  • If u can make a meeting, u will know u r not alone n every zebra feels or has felt this way

  • Xxxxxxx Yzzzzzz - that is one of the many reasons for having this group. We DO understand what you are going through. It is hard for anyone else to ever really know pain or illness unless they are experiencing it. Hang out in here a bit more and we will be sure you don't get lonely. Also - what Cheryl said above!! :)

  • Yes, every day

  • Yes, I think that's very common, unfortunately. We are all here for you and completely understand. Please reach out!

  • We all have felt that way. Chronic illness is hard & isolating. It's important to build a support system of family, fiends, & professionals.

  • Attending a live support group and talking with people like Dawn in the therapy pool really helps me but even my husband of 35 years doesn't get it completely. The hardest thing for me is hearing other family members making comments to my son who has EDS and chronic pain and limitations that they think can be fixed without asking for the facts. It must be his fault that the shoulder surgery didn't work, he didn't do enough pt or exercise blah blah blah! Wait! This was supposed to be helpful! Hang in there!

  • My family who I don't talk to much will say things like oh idk why you have that. No one in my family had it... the EDS that is I have other genetic conditions that some came from my father's side of the family.

  • Thank you. He is great we've been together 5 yrs. Known each other 15 yrs. There are just moments on both ends where we get frustrated with each other and I try to explain things to him and hell say I know. Sometimes I wish we could switch bodies with our more "able bodied "? Friends just so they could expierence our daily struggle even for just a few hrs

  • I am new to the group, how do I know when there are meetings in my area?

  • I know the feeling. I wouldn't wish this pain on anyone but even just a few minutes so they get an understanding of what it feels like 24/7 would be really helpful. It's frustrating. I know I get most annoyed when people listen to my story and decide they have EDS too. I have a neighbor who has a heart condition who is now convinced he has MCAD because he forgot to take a pill once and had an anxiety attack which caused him shortness of breath. Another stranger decided that he has EDS because he has pain too despite his doctor diagnosing him with osteoarthritis.... If they only knew!!

  • Xxxxxxx Yzzzzzz can happen spontaneously! Even Dr. Chopra says so! And he's a genius.

    I completely understand how you feel.

    EDS can/does cause isolating and debilitating symptoms.

    It is very painful physically and emotionally. You aren't alone! You are in good hands, here! The CT Zebras kick ass. Every day. EDS is hardcore.

  • Hi kara, welcome! More info for meetings and location is going to get posted soon. We do meet on the second Saturday of each month at 3 pm. Stay tuned. Where do you live ?

  • I live in thomaston but can't drive , hoping to do so again soon

  • Every day. But it's so strange because we know we aren't! Brw This is a common existential "problem" and not just an EDS thing.

  • Xxxxxxx Yzzzzzz indeed. Good to remember and remind ourselves of often.

  • My ex-wife dropped a divorce in my lap the day after I came home from an onset of paralyzing ring enhanced C spine lesions on my high cord. Then I fought as my own lawyer in court a custody battle, while undergoing chemo at Smilow Cancer Hospital for 7 months because I was mis diagnosed with M.S. People can really suck at just the right time.

    I'm frikken killing it at the game of life now though I gotta say. My come back makes the 2004 Redsox comback look like a game in kindergarten sandbox.