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madd94

824d

More of a vent than a question. I’m just having an impossible time accepting my very recent HSD/EDS diagnoses and feeling so so alone and misunderstood. My life has become nothing but going to work and using my days off to recover from work. Missing out on socializing, activities, hobbies I used to love and can no longer physically do. I feel so much shame and boredom and exhaustion at the same time. Everything revolves around pain and it’s no way to live. And I’m spiraling today wondering if it only gets worse from here.

Top reply
    • AzzieRivers

      817d

      I've been diagnosed 9 years, I'm on Disability and I've gotten a number of additional diagnoses since my journey with knowing my life of pain and dysautonomia was from EDS started with my diagnosis 9 years ago. It has gotten harder physically but mentally it has gotten easier, I've come to accept it and with some therapy I'm doing much better mentally/emotionally. And it is still isolating but I think for me it's more isolating because now I have a mild cognitive decline from an unidentified origin. I don't know how your journey will go but I think if you can build a support system, learn to pace yourself, accept asking for help when you need it, accept things will not be the same and that you will have good days and bad, snd just take things as they come without being too hard on yourself that it will feel better even if things are hard. Remember two things can be true at one time. It can be hard, it can suck AND there can be beautiful moments, you can rock, maker strides, you are still you! You got this and you got people in your corner! You're not alone❤️

    • AzzieRivers

      817d

      I've been diagnosed 9 years, I'm on Disability and I've gotten a number of additional diagnoses since my journey with knowing my life of pain and dysautonomia was from EDS started with my diagnosis 9 years ago. It has gotten harder physically but mentally it has gotten easier, I've come to accept it and with some therapy I'm doing much better mentally/emotionally. And it is still isolating but I think for me it's more isolating because now I have a mild cognitive decline from an unidentified origin. I don't know how your journey will go but I think if you can build a support system, learn to pace yourself, accept asking for help when you need it, accept things will not be the same and that you will have good days and bad, snd just take things as they come without being too hard on yourself that it will feel better even if things are hard. Remember two things can be true at one time. It can be hard, it can suck AND there can be beautiful moments, you can rock, maker strides, you are still you! You got this and you got people in your corner! You're not alone❤️

    • Delirium

      817d

      TOTALLY. I relate so much, so glad I'm not the only person who has felt this way. Something that's helped is learning about "pacing," which is planning your energy expenditure so you're not so exhausted. I'm not very good at it yet. I'm also starting to use mobility aids that save energy, and got a handicapped parking placard to save energy too. Every little bit of saved energy helps.

    • LovelyNova

      820d

      I’m sorry you were having this kind of day. I can sooo relate. I was diagnosed a year and a half ago and had a very difficult time, sometimes still do, grieving the idea of what my life would look like. I never pictured this. And still grieving the things I used to do that I now struggle to do… there are those very difficult days in which everything is exhausting in every way (mentally, emotionally, physically) and the depressive, loneliness, fear and/or anxious feelings creep in. Such a struggle. I hope you have brighter days and enjoy those however you can. ❤️

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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