7 things you need to know about your loved one’s PH diagnosis

Tagged: 

  • 7 things you need to know about your loved one’s PH diagnosis

    Posted by Community Member on May 8, 2018 at 11:07 am

    Pulmonary hypertension is considered an invisible illness because often the symptoms aren’t apparent to other people, but that doesn’t make it any less serious or challenging to live with. Check out this list of 7 things people with invisible illnesses want you to know to learn how you can better support your loved one with PH.

    Read here: https://pulmonaryhypertensionnews.com/2017/10/05/things-people-invisible-illnesses-want-you-to-know/

    Did anything on this list surprise you? What other things have you learned about invisible illneses since your loved one’s diagnosis?

    Community Member replied 3 Members · 3 Replies
  • 3 Replies
  • Community Member

    Member

    Hi!
    I would also like to add that I’m still “me” even with this diagnosis. I feel like a lot of people including friends and family are quick to just talk about my health. I’d like them to know that I highly enjoy talking about other things. It makes me feel like I’m not just a diagnosis. As much as I do talk about my condition on social media to spread awareness and educate, I do other things and have other hobbies aside from hospital trips and doctor appointments.

    Does anyone else struggle with people just seeing them as their diagnosis and asking just health related questions ?

  • Community Member

    Member

    Hi Brittany. We experience the same thing. Friends come over and my wife’s health would rule the topic of the conversation if we didn’t change it to something else. We genuinely appreciate the concerns our friends have about her health, but she’s still Charlotte from the block (LOL!) and can talk about many other things.

    • Community Member

      Member

      I find I have to be the one to change the conversation a lot ! Or try to do something outrageous so people know I’m still me! “Charlotte from the block” I fully appreciate the JLo reference!!!!

Log in to reply.