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rib

715d

hi! recently my symptoms have progressed and it's been really hard to want to do anything. when I talk to family and friends about it they are really invalidating and it's hard to cope with. It makes me feel like what I'm feeling is fake and I need to be something I'm not. any tips for coping with this kind of feeling?

Top reply
    • Juji

      715d

      And also there’s different articles like this one that I like to give my mom haha

    • Juji

      715d

      https://themighty.com/2016/01/how-to-help-a-loved-one-with-postural-orthostatic-tachycardia-syndrome/

    • Juji

      715d

      And also there’s different articles like this one that I like to give my mom haha

    • Juji

      715d

      @rib oh Rib! How I feel this post. My husband and mother both invalidate and have gone as far as accusing me of being a hypochondriac. I get so angry, like hyper-vigilante. So I finally got myself to the right doctors. Just to have the different diagnosis’s on paper, so they knew it was real. Still didn’t help their empathy. But it helped me, my mom isn’t a doctor, she’s not a geneticist, my husband isn’t a doctor or geneticist.

      • rib

        714d

        @Juji that's so frustrating! You don't want to feel the way you do, you just do. Thats all super invalidating and unfair. Im glad you found the right doctors! I think I'll have to try and find comfort in having the diagnosis on paper for myself. That's a good reminder, they aren't doctors. Thank you for the article, I'll have to look into more!

    • Wanderinglumos

      715d

      Idk if you journal, I don’t often but sometimes when I feel like that I just honestly journal how I’m feeling about it. Sometimes it’s just what i need to mentally get through the hard days. Or I try to find accounts on social media/places like this app just to be seen even if I don’t post. It’s hard when people don’t understand how we can feel. Please feel free to message me if you want to talk more about it! I’m really open to chatting. It helps to have someone who can listen and understand when you need to vent. 🤗

      • rib

        715d

        @Wanderinglumos thank you for the advice. I should try Journaling again!

☝ 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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