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    10 THings you can say to someone with a Chronic Illness...good article

    Motivating, Educating & Empowering the MS Community
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    10 Things That Someone with a Chronic Illness Might Like to Hear
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    By Gay Falkowski

    As a person living with MS, you’ve likely got a long list of things that well-meaning friends and family have said to you that you’d like to never hear again — such as the dreaded “But you don’t look sick.” You know what you don’t want to hear, but have you thought about what you do want people to say to you? Here are 10 suggestions from others who have a chronic illness.

    1) I wish I knew what to say, but I care and I’m here for you. Ultimately this is the truth behind any other heartfelt statement so it’s a good all-rorund sentiment to express when nothing else comes to mind.

    2) I believe you. This one of the most powerful things you can say to someone with a chronic illness such as MS that has invisible symptoms. It’s validating and comforting.

    3) Can I bring you food? Or is there a chore around the house I can help with? Doing the dishes or putting together even a simple meal can be a huge energy drain when fatigue sets in, so when others take care of these tasks it can be a big relief.

    4) I know how hard you’re trying. This acknowledgement can be a really big motivator to someone who feels as though no one understands how difficult it can be to push through the tough times.

    5) Don’t feel bad if you have to cancel plans at the last minute, I understand. Guilt from having to cancel plans because of not feeling well, or not having the energy, is common for people with MS. When someone expresses understanding, it’s a great relief.

    6) You look so good, but how are you really feeling? When someone says you don’t look sick, most of the time they think they’re paying you a compliment. It’s nice to hear someone acknowledge they understand you may look good but not feel well.

    7) I hope you’re as well as possible. No matter how hard you try to ‘be well,’ a chronic illness limits your well being. Good wishes that give a nod to those limitations take the pressure off and let you know they ‘get it.’

    8) It must be difficult to be in pain or feel sick all the time. The idea is to let someone know you’ve really heard what they’ve told you by reflecting that back to them in your own words. When you actively listen to someone, they feel validated, which is important to people with a chronic illness.

    9) I just wanted to check up on you and let you know I miss you! After being out of the loop for a while, it’s nice to know that your friends miss you and think of you — and that they want to be around you whenever you’re up to it.

    10) You’re doing everything you can. This one can be such a relief to hear instead of another piece of unsolicited advice. Guilt from feeling like you should be doing more is common, so having someone recognize that you are doing everything you can is uplifting.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..

    #2
    Originally posted by Lazarus View Post
    9) I just wanted to check up on you and let you know I miss you! After being out of the loop for a while, it’s nice to know that your friends miss you and think of you — and that they want to be around you whenever you’re up to it.
    I've been feeling this often lately but how do I accomplish this? Send them all this article and hope they get it? Hope they understand that doing it once isn't enough?


    Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

    Comment


      #3
      Num one is the best!
      Love, Sally


      "The best way out is always through". Robert Frost






      Comment


        #4
        I like number 6.

        Comment


          #5
          I wish I'd hear more of #5 ("Don't feel bad if you have to cancel plans at the last minute. I understand"). I have big problems dealing with how to cancel plans so as not to inconvenience anyone.
          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

          Comment


            #6
            Numbers 5 and 6 would be high on my list.
            Virginia

            Comment


              #7
              Originally posted by agate View Post
              I wish I'd hear more of #5 ("Don't feel bad if you have to cancel plans at the last minute. I understand"). I have big problems dealing with how to cancel plans so as not to inconvenience anyone.
              I've sadly become a consummate liar. Some of my excuses defy credulity actually, I really don't even know if they're believed.

              I just can't keep saying "I'm tired" at the last minute over and over again, I feel the need to come up with more interesting excuses in order not to distance people even more. I just don't think people believe that someone can be THAT tired THAT often.

              People think I have a far more interesting life than I have. My excuses sound like I'm off saving the world half the time. I've gotten rather creative in order to be believable and to add variety, I'm afraid...gulp...
              Last edited by SuzE-Q; 04-16-2016, 12:36 PM.
              Please Note that my posts may have been arbitrarily altered by a Moderator and may not reflect my original content.

              Per Mike Weins: "...the admin/mod team doesn't have to provide a forewarning/warning/mention about altering a members post. It doesn't matter if they fix a link, remove a link, fix a typo, or whatever...."

              Comment


                #8
                I am especially fond of #10. But I like all of them!

                I know I am doing pretty well for having MS. I mean, I go surfing for crying out loud. But only my family knows that much of the day I am laying down resting. And that many nights I can't cook. I can't work full time...And that I am in bed at 8pm-- sharp. And that I don't attend any parties in the evening. And that I can't surf after lunch.

                The list goes on, right?

                Comment


                  #9
                  It's 2 and 3 for me. It took me along time to get diagnosed. Decades. "I believe you" would have really helped.

                  And bringing me food or fruit or take out or your leftovers could save me energy that I don't have. When I was writing the service for our wedding, a friend who was going out to lunch w me brought it instead. I cried. She had no idea that I needed to stay home in comfy clothes that hot day. She is the real "Ann."

                  Amor y chocolate,
                  ANN
                  Last edited by stillstANNding; 04-16-2016, 02:12 PM.
                  There comes a time when silence is betrayal.- MLK

                  Comment


                    #10
                    SuseQ, your post is exactly me. I feel so guilty about saying I am so fatigued all the time that I too try to come up with something else. When really it is just plain so much fatigue it is unbelievable. But how many people can understand that kind of fatigue? No one who hasn't been there I am sure.
                    Virginia

                    Comment


                      #11
                      It's one thing to be tired. It's another thing to be tired to the point where you're losing your appetite, sick at your stomach, becoming a fumblefingers at everything you try, and if you're still walking, it's more like lurching or reeling. I think people with these problems become adept at covering them up, and so the rest of the world thinks that if they say they're tired, they mean "tired" in the way a normal person (one without MS) feels tired.

                      If you think back to the time before you had MS, you probably felt tired in the midst of some activity sometimes but you could soldier on usually. MS gets in the way of that, or at least it definitely does for me.
                      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                      Comment


                        #12
                        These sure are wonderful responses to read...

                        When I have to cancel plans with friends I have stopped trying to explain the detail of what is wrong. It seems a response that works better for me is to simply say "My MS has become very active today. Or My MS has raised its ugly head"
                        This is a very true and accurate answer to why you have to cancel plans. IT actually gives people the sense that something is very wrong on that day.

                        However, Suz-Q has a very creative response....sounds like a book there. really!
                        "How I became a consummate liar"
                        Or
                        "Lies I knit so my life will not unravel"
                        Or
                        "When all you can do is lie"

                        ......
                        Linda~~~~

                        Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..

                        Comment


                          #13
                          Sometimes a lie is the only way. If you know that most people won't want to listen to your long catalog of things that usually go haywire when you're too tired, and most people won't, you have to keep it short and sweet.

                          "I'm sorry but I just can't" works sometimes for me. People have to be fairly aggressive to reply, "Why can't you?" though some do say that.
                          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                          Comment


                            #14
                            Just keep repeating, "Because I can't." They'll give up eventually.


                            Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

                            Comment


                              #15
                              Originally posted by agate View Post
                              I wish I'd hear more of #5 ("Don't feel bad if you have to cancel plans at the last minute. I understand").
                              That would be something every doctor who has patients with MS, should tell those patients.
                              "Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."

                              Albert Einstein

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