Social Challenges of FM/ME. Advice Needed and Welcomed!!

Discussion in 'Chit Chat' started by zenouchy, May 10, 2009.

  1. zenouchy

    zenouchy Member

    Hi All,

    Sorry this is a bit long. What do you do and what are your thoughts on handling social invitations in a graceful and POSITIVE way with people that are acquaintances? Gosh, am I having a tough time with that one!! I'm in a monthly Ladies Night group in which I know some of the people but not all of them, and I don't go all that much (because of FMS), so it's easy for people to forget that I have chronic health struggles. They have busy lives and forget about my health stuff. I don't hold this against people. I'm sure I don't remember everything about them either.

    A simple RSVP for me (and probably a lot of us) turns into anxiety because I don't know how I will feel that day since my health changes often. I've always been a positive, upbeat person and want to continue to project that, but I have to somehow convey why I can't just RSVP "yes" or "no". I'm just not going to know until the day of the event. That's also hard on the hostesses re: planning food. Sure, I can say I'm happy to eat ahead (which I did), but I know these people, and they would feel bad singling someone out to not eat.

    Focusing on my health and mentioning it at all is hard b/c it takes away from the positive part of me. UGHH!! The way I responded to the last event was so awkward for me. First I had a tummy bug and told the hostess I was hoping to attend but wasn't sure b/c of that. She was very nice and said to feel better and just let her know when I knew. Then, I emailed her with: "Feeling much better. I have a chronic illness (fibromyalgia), so I never have perfect certainties because of it, but things look great right now. Look forward to seeing you and catching up!"

    My mom said it would have been better to RSVP with a "YES" and if I don't make it to say I don't feel well. It makes sense in a way, but then I feel so much pressure mounting up until the event because I don't feel like it's completely honest (and the pressure doesn't help our health either). My husband likes my approach better. There's so much anxiety either way for me. Can anyone else relate to this?

    I have this paranoia of being different and people not understanding. Don't know if there's a perfect solution. Thanks for listening. Would love to hear what others do.

    Thanks again,

  2. Pippi1313

    Pippi1313 New Member

    Can you "tentatively accept" an invitation, explaining simply that you would love to be there, but can't positively confirm the date just yet?

    If your host/hostess ends up with a single serving of leftover food, their world won't end! :)
  3. zenouchy

    zenouchy Member

    Thanks for responding and helping me brainstorm ideas! I agree---leftover food isn't the end of the world. Good point there, thanks! I was trying to offer up a way of being nice on that.

    When I said I couldn't positively confirm the invitation, the response was "let me know when you know". I guess in the future I just won't know until the day of---it's still different then what everyone else does, and they might want to know why. I guess there's no way around it. Thanks for your help!


  4. Janalynn

    Janalynn New Member

    If the person knows about my FM, great - if they don't, I tell them briefly (not a full blown description, but that I have chronic pain and....) then that I would love to attend, unfortunately I often don't know until the day of, how I'm going to feel! If they need a definite yes or no, right now, I should probably say no, because I don't want to disappoint you and have you plan on me (food, place setting whatever). Almost everytime I've said that, the other person has said, if you feel well, please come (even after saying no).
  5. Pippi1313

    Pippi1313 New Member

    People often want to know why. But at that point, they're the ones being socially awkward.
    If the person is close to you, s/he already knows why. If not, they've crossed the line into prying into an acquaintances' person matters.

    You simply have to come up with a single, all purpose statement that doesn't actually tell them anything, yet lets them know any further probing would be socially inappropriate.

    An astute hostess will get the message. And you've upped your status as a person-of-some-mystique! LOL!

  6. zenouchy

    zenouchy Member

    You guys are great! I appreciate your wonderful thoughts and ideas and taking the time to respond. I think they want an RSVP for food and if no-one RSVP-ed, they would have no idea how much food to provide. They should be flexible and be able to make an exception for me---very true!! Elaine, I totally agree that chronic illness issues are a valid excuse. Others just don't see it that way, but they should. I really appreciate everyone's comments and will incorporate them and learn the best way to handle them in any given situation. They are all very helpful!

    Kind of expanding the conversation here, I'm amazed that people can't empathize with others unless they have not gone through an event or situation themselves. It's only since my husband had a very bad reaction to a root canal with severe tooth pain that he has REALLY understood how bad my fibro flares used to be (luckily they aren't like that any more---although I still deal with several other aspects of fibro). All the talking and explaining in the world did not compare to him understanding until he experienced severe tooth pain and he had to take narcotic pain meds. ONLY then did he REALLY get it. I told him to imagine having that severe pain in his entire body with no end in sight, and he said, "wow, I might become suicidal".

    People just can't take the time to try to put themselves in other people's shoes. I have always tried to do that. Why others can't I don't know. I'm not perfect in understanding people, but I've always tried. I remember an office where I worked years ago, long before I had fibro, where ANOTHER person had fibro. People made fun of her, and I felt really sad for her. I just couldn't understand why people could be so mean. It seems obvious that if people are "mean-spirited", they aren't worth socializing with. There's bad grapes in every bunch, I realize. Sometimes they're hard to stay away from.

    I'm in a phase of wanting to socialize but having a fear of being rejected. Some of the women are very nice and others are unusual in how they respond to me. There's a woman in the group who's friends with ANOTHER woman that has lupus. Lupus is obviously an illness that no one wants either. However it's different than FMS and ME. This woman is able to be more active, and her friend always comments about the woman with lupus who handles her illness so well and is able to be so active. It's obnoxious and hurtful to me. I wish I was able to ignore comments like that. Sometimes I'm able to shrug them off, but sometimes they hurt. I KNOW I do the best I can. It angers me. It's short-sighted and rude.

    I don't want to avoid events all-together because some people are nutso. It's tough to feel like I belong when people have more in common than I do---most have kids and I don't (because of my illness). I feel like I have to be prepared tonite knowing that I can oblivious comments from people. She just idolizes this one friend of hers and is oblivious to fibro. She's even asked me to go on long bike rides even after I've explained more then a few times that energy is a big issue for me. She's CLUELESS!!! I wish I wasn't so darn sensitive. It's really my Achilles heel. I just need to laugh this off, don't I?

    Thanks all. I REALLY appreciate your support.

    Take care everyone and be well,