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The impact on family and friends

How has your diagnosis/experiences impacted your family or friends?

  1. As for 'friends' I don't have many left after either declining or canceling commitments. I don't see my family as often as I want to, and my sister lives next door!! Most days the effort to walk over is just not worth it. She too has auto-immune diseases, and we talk on the phone, but I am missing out on my nieces and great nephews and nieces lives. They don't understand why I don't come over. Most of my life is spent at home with my husband, who is an angel about all my problems. He helps out with what he can, and does half the things I should be doing. So the answer to your question is yes, it has impacted that part of my life greatly.

    1. I don't even know how to explain to my boyfriend to make him understand. I feel like I'm disappointing him when I cancel at the last minute and he says he understands I just can't do everything I want to do....I even explained the Spoon Theory to him. Which I feel like it helped, but he just keeps forgetting how much pain I'm in because on the outside I don't look so bad.

      1. Before my dx, no one including myself knew what was wrong! I have lost almost all of my "friends". I'm incredibly grateful for the very few that truly care and want to help well as get together even if its hanging out on my bed watching a movie!
        My husband is my angel....he never gets mad or aggrivated! My two sons are still confused but as time goes on they are beginning to see the changes in me. Now if I could just get them to do dishes!!!!

        1. Moderate to severe impact. Not able to work anymore. Periods of high activity are followed most often with day or two of Arthritis exacerbation (pain, swelling, stiffness in joints, fatigue from overdoing gardening, cleaning, whatever. Then start cycle over again.

          1. Oh yeah! People only see me on my good days when I'm walking and talking and taking care of business. They don't see me the next day when I can't move. Friends, relatives, have no idea. "You sound fine on the phone!" One friend is getting kind of miffed because I don't show up to watch the NFL 4 out of 7 nights(no longer just Sunday and Monday Night). I tell him I have to relax. He says, "You'll be sitting in a chair watching TV!".

            Trying to explain PsA to well-meaning people with no understanding used to frustrate me something awful. These days I seldom talk about it except to the dr and people with similar conditions. I find I'm a happier person.

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