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AllieMae

654d

Hi, I am new here. Currently working towards an official diagnosis for hEDS and for POTS, but specialists are taking months to get in to. I am in college, and trying to deal with health while also getting through school is completely overwhelming, my anxiety is through the roof and I get sick pretty constantly just from wearing myself thin. My professors and bosses and even my family sometimes just can’t understand. Anyway, just looking to connect with others here who might be going through the same things. Advice is always welcome and appreciated as well :)

Top reply
    • jellycats

      326d

      hi! i have pots and hyperextending joints, as well as some other chronic conditions and ive been struggling alot too. im in my second year of college and i feel like my pain has gotten worse and no drs have been able to help so far, im thinking about getting forearm crutches so i can actually make it to class when im in a pain flare up. the wait on drs just for them not to be able to actually help is super disappointing and frustrating, im sorry youre going thru that as well. im here if you ever wanna talk :)

    • jellycats

      326d

      hi! i have pots and hyperextending joints, as well as some other chronic conditions and ive been struggling alot too. im in my second year of college and i feel like my pain has gotten worse and no drs have been able to help so far, im thinking about getting forearm crutches so i can actually make it to class when im in a pain flare up. the wait on drs just for them not to be able to actually help is super disappointing and frustrating, im sorry youre going thru that as well. im here if you ever wanna talk :)

    • Wednesday_7

      586d

      Yeah, waiting for a diagnosis really sucks. I’d recommend starting to accommodate yourself wherever you can in your day to day life and just try things that help POTS and EDS even if you aren’t sure. So like see if water and salt make you feel better and maybe start learning about CHOPS and stuff. Good luck!

    • Lkbmotion

      586d

      Welcome! I am also a college student with POTS. Hang in there 😊

    • jellypeanut

      587d

      Hi AllieMae! I felt so compelled to answer & just send love & support; I have a dear friend with the same name. I also struggle with what you’re feeling. I just graduated college recently & went through the exact same feelings. I have Wolff Parkinson’s White & AVNRT. My teachers/peers/family often still don’t understand the depth of what it can be like to have conditions like ours. I just tried the best I could taking every day slow & focusing on listening to my body & taking care of myself. I know sometimes that’s better said than done because I’m not very good at taking care of myself & being preventative. However I just wanted to spread some sunshine; YOU can do this!! <3 good luck with school, reach out anytime

    • Lesh1313

      596d

      Same! Not in school but I work 40 hours a week on my feet 8-10 hours a day and no one understands I’m always in pain even on my days off and I’m always exhausted!

    • goblin49

      654d

      I'm literally in the exact same situation rn, if you need to talk or anything just lmk!

      • AllieMae

        654d

        @goblin49 Aw thank you!! So sorry 😢

    • MeeB333

      654d

      The best advice that I can give you is to be sure to educate yourself as thoroughly as possible about your own conditions, so that you can inform others, whenever necessary. Don’t expect people to automatically know or understand, as it’s likely they will not have a clue. But, knowledge is power, so the more you know about your issues, the more u can help others understand the depths of what you are dealing with, increasing likelihood that they will be more compassionate and empathetic to your struggles. Most people will respect how educated and resilient you are for being able to function at all and for your ability to articulate these difficulties. 💚 Stay strong! 💜 And, Good Luck!! 🍀

      • AllieMae

        654d

        @MeeB333 thank you so much 🥹 feeling so seen.

☝ 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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