Family don't try to understand

How do you get a family to understand what you are going through? All I hear is, well I know there are alot o f people out there that have your disease and they don't have the complications that you are going through right now. Or there are people alot worse off than you and they do just fine. I hear I am sick of hearing about how you feel. What am I supposed to do


  • AlyssaWinegardenAlyssaWinegarden New Life Outlook
    @tonyabaisden thank you for posting this question! I've shared it on our Facebook page as well - you can view responses here: please feel free to type 'Follow' as a comment to be notified any time someone posts an answer on the Facebook post! :)
  • AmagnusAmagnus Member
    edited July 2016
    I have a similar problem...I was afraid to go this evening to fireworks because my face was stinging and I had the malar rash, and I would be outside at sunset which makes things worse. I asked my daughter if she would be terribly hurt if I didn't go and she just said, "No. I'm used to it," which made me feel awful. It's bad enough I feel like some sort of vampire about the sun. I love the 4th...It really hurt me to miss it, because its one of the few times of the year we see family. I did not need to be told that my daughter is used to me letting her down on top of it. :(

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