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    • #15159
      Leah Leilani
      Keymaster

      How does it make you feel to be told you are “inspirational” or “brave” or “strong” when discussing your life with your disease? Do these compliments make you feel awkward or self-conscious? Does it feel as though these compliments sensationalize your life with MD? What are some better ways people could compliment you?

    • #15162

      I do feel awkward, and I try not to show it. I also think to myself, “what did you think I would do, give up?” or “what would you do, lay down and die?”

      It depends on where I am when someone says this to me. If it is out drinking or somewhere someone has lowered inhibitions, then I let it slide because they won’t remember. If I think someone is saying that as a rote response, or it feels like an act, then I try to explain that my normal activities are what anyone would do in this situation.

    • #15177
      Philip
      Participant

      I am constantly told I’m an inspiration, to which my response is always the same, I don’t feel particularly inspirational. When I reflect on the sentiment behind what is being said, I feel they’re trying to be encouraging and, in some cases, they recognise in themselves a vulnerability that makes them doubt they would be able to cope with were they in the same situation as my me.

      The most dramatic thing that I have had said to me, from someone very close to me, was ‘I think you’re amazing, I would have ended my life within a year as I know that I would not be able to cope’. How would you respond to that?!

    • #15181
      Leah Leilani
      Keymaster

      Philip, you mentioned an important point that people may be expressing a certain vulnerability about how they would handle our situation when saying that we are strong, brave or inspirational. I do however think that a person never realizes how mentally strong they are until it’s their only option. Maybe that’s a good reply the next time someone confides in you that they would’ve taken their own life if they were in your shoes.

    • #15182
      Leah Leilani
      Keymaster

      Dani, I think you’re right in saying that different situations require different reactions and responses. I don’t know if people will truly understand that living the way we do with the diseases we have isn’t inspirational until they experience something similar.

    • #15286
      Kristy Greenardi
      Participant

      Most people just say the same thing, thinking that they’re encouragement will help me ‘push on’. They only see me on day that I’m well-ish & of course they’d think that I’m an inspiration because I’ve made it out of the house for a couple of hours!

      What they don’t see is that evening when I’m so fatigued that I can’t lift my arms or move my legs & just taking a breath is exhausting . When my husband has to shower me & get me into bed before I collapse. Or when I’m so upset that I have a panic attack & he has to try to calm me down. The look in his eyes breaks me because I’m so broken. 🖤

    • #15308
      Leah Leilani
      Keymaster

      Kristy, I know how you feel. Sometimes it feels like we’re constantly fighting a battle against our bodies. But it makes me happy to hear that you have such a loving and caring husband who takes care of you and is your support system. Remember that it’s okay to not be okay and to lean on others for support.

    • #15340
      Pete Barron
      Participant

      This discussion brings up another good book: “Don’t Call Me Inspirational” by Harilyn Rousso. Personally I hate the “inspirational” calls from somebody I don’t know, (those who know me don’t throw that one out at me!) It seems that they are trying to build themselves up on our backs so to speak. It’s like if they notice, then they are somehow better. Hard to explain, but it’s false praise anyway!

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