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How can I help my family and friends understand what I'm going through?

  1. Our family is the worst. They really don't understand. They see us on our good and bad days. Let them know that you need them and would appreciate their emotional support. Let them know you might feel insecure or even embarrasses. Tell them you are so drain that there are days you can't get out of bed. Just talking can take your energy and keep you in bed all day. I want to participate in our family events, but I can't.

    1. I find this impossible as I am my 8yo and 17yo carer. Both have autism. Its just the 3 of us and I do EVERYTHING. My youngest is active and wants to go swimming, trampoline etc and I do my best. But I never feel good enough and hate that I let him down sometimes. They help and do stuff obviously, but it really is just me! The pressure of that is massive and I don't know if that keeps me going or makes me worse. A bit of both really.

      1. It is hard to make them understand sometimes. They want to help you feel better the best they can. I have a problems with extreme fatigue and will sleep for up to 18 hours. I get so frustrated that I loose so much time. I then have trouble falling asleep at a normal time at night. It’s an unending cycle.
        I have to hear how I need rest and if I went to bed at a normal time I would feel better. I finally advised my husband that he needed to educate himself and read up on the disease process and gain an understanding before advising me on what will make it better. It’s helped a little. I’ve been referring to articles and posts others have made about how PsA affects them and that has helped him to see it's not just me. That it’s part of the desease process.
        When something is wrong with me, I try to explain it to my family and friends why it’s happening. Why PsA is doing what’s its doing. I guess that’s the nurse practitioner in me coming out. I always found patients understood things better if they knew WHY it was happening, not just this is it and do this end of story come back if not better.
        Education and understanding is the best way to help you and be able to explain to others why. If they understand why, they may become empathetic as to what you are going through and it’s not just in your head.

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