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    How to get others to understand...

    I have been diagnosed with MS for about 3 years now and have had a hard time dealing with how the people around me don't REALLY understand how I can't do some things, or how I get tired etc. Most of my symptoms are hidden and to the people I talk with and interact with day to day would never know I have MS. I used to think I was lucky to have no visible symptoms but I actually think having all invisible symptoms is worse! Nobody understands the constant brain fog that I am in and how I can't remember anything. They don't know how standing for long periods makes me tired beyond belief or why I can be moody.

    My husband has been gone for a week traveling for business and so I have been home with my two little kids, while one had a stomach bug, we had 2 snowstorms resulting in 36" of snow that I had to shovel alone all on top of all the other daily household tasks that tire me on a normal day.... I am exhausted beyond belief and he doesn't quite "get it" how difficult the past week has been for me!

    Along with my husband, my friends never seem to "get it" when I can't help do what they need or can't go places they want to go. I end up being seen as lazy or rude for not doing things that people want or need me to. My memory being bad makes it really difficult to be a good friend also because I often can't remember things we talked about that are going on in their lives or important dates in their lives etc.

    How do you deal with this part of having MS. I am really struggling with this lately and feel stuck!

    #2
    I have often said that "you do not get MS until you get it". That is the only way I can sum it up for you. It is especially hard for others to see you have any difficulties at all if you do not show any outward signs of it. Being relatively unaffected is a double edged sword, on one hand,it is wonderful to be physically unaffected, but people do not realize you are affected with anything. . Even if they do realize that you are affected with MS, they do not know what the ramifications are.
    hunterd/HuntOP/Dave
    volunteer
    MS World
    hunterd@msworld.org
    PPMS DX 2001

    "ADAPT AND OVERCOME" - MY COUSIN

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      #3
      Hi the misses

      I find this very difficult recently. We must live in the same region because I just had more than forty inches of snow this week. I'm alone with kids away at school or half hour to hour away. I finally gave in and hired a guy to plow for me. I can't physically do it anymore. I fell twice just trying to get into my house. You should find someone to help. The exhaustion of shoveling can really take a toll on your ms What a difference coming home to a clear driveway. Wonderful!

      I know how you feel about people not understanding. I have a lot of deficits but not enough to stop working. Although my doctor believes I should stop I won't give in until I absolutely have to. However getting through my shifts is overwhelming most days. No one really sees this though. I wall walk a lot and despite having spasms, electric shocks, parathesias, weak legs, and fatigue beyond belief because I keep moving its easier to assume I'm okay. If I lose my balance or have to sit for a bit someone might ask if I'm okay. It's not that people don't care it's just that they don't know how to help or what to say. It hurts sometimes and feels lonely. Unfortunately it is what it is

      I find this forum helps me talk about these things that no one around me really wants me to talk about or understands. We all understand how you feel. It stinks!!!

      Comment


        #4
        I feel your frustration

        I was diagnosed last year, and I, like you have no visible symptoms. While I am happy that I don't have any visible symptoms, it is extremely frustrating. I think the comment that makes me the most angry from the people that know that I have MS is "you look so good!" As if looking okay makes the symptoms non-existent?? The fatigue is apparently impossible for anyone to understand, even when you live in the same household. My boyfriend, whom I live with, doesn't understand and constantly pushes me to stay awake, as if it's a conscious decision whether I stay awake or fall asleep. I have isolated myself from what used to be a large circle of friends because I can't keep up with the relationships between work, and my own responsibilities and my boyfriend. I just don't have the energy to keep it all up. I do everything I know related to eating healthy, taking the right vitamins, and whatever I can to help my energy level.

        I share this because I can relate to your post. I don't know how to make people understand when they can't see it.

        Penny

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          #5
          THe other day, my husband was making all kinds of fun plans about us going here and there. So, I strapped on ten pounds of weights on each of his legs. And I asked him to hold one pound weights in his arms while he used thr computer and roamed the house, within less than five minutes he shed the weights and said he saw now what I was up against.

          You have to advocate for yourself. State the facts of what you can and cannot do. People who are healthy will forget, it's human nature. It's your job to speak up for yourself!

          Comment


            #6
            That was a great idea, poolwatcher!

            I don't experience fatigue like most do here, but I do have neuropathic pain that people don't see. So I was a little encouraged the other day when my company started a respect and empathy campaign that encouraged patient-facing workers to try things like putting dried beans in their shoes and walking around in them for a few hours so they could understand what diabetic peripheral neuropathy feels like. A closer description would be using sharp little stones that are heated to around 180 degrees, but at least they were trying.
            PPMS
            Dx 07/13

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              #7
              Not sure it's within our control

              I think some will get it and some will not. Those that get it will do so to varying degrees. I'm still struggling with this, as like you, Loveboxers, I find it hard to navigate between work, family, home responsibilities and friends. Still trying, but it is hard, especially as my symptoms are largely invisible.

              My husband gets it to a point. He doesn't truly understand it in his marrow, because he can't do. How could he? I could not have done when I was healthy. I do share with him much more of the time what is happening, but he feels helpless, so I don't always tell him when I am having a rough time.

              Friends are more problematic. I haven't told many, because I am not confident of their reaction. One friend I have told doesn't even drop me the odd note to ask how I am. It hurts.

              Comment


                #8
                They won't get it

                None of my family or friends get it. My husband I thought did, but now doesn't even care. People just don't get what they can't see. Its stupid, its unfair, but its the truth. I am sorry you are struggling with it. I am too.

                Take care
                Lisa
                Disabled RN with MS for 14 years
                SPMS EDSS 7.5 Wheelchair (but a racing one)
                Tysabri

                Comment


                  #9
                  They do kind of get it, but not really. My relatives finally got some part of it when I had to wheel my walker up a hill, and through a church for a funeral.

                  Lots of complaints to the church about accessibility etc., and not just from my family, after the crowd saw me wheeling bravely onwards.
                  Honestly, the kindness and sympathy shown by so many people almost made the need to use the thing okay.

                  I'm so sorry, Lisa. Your husband has been horrible. I 'd like to think if the situation was swapped with my 67 year-old bloke, and he was buggered and I was healthy, I'd be brave and good and strong.

                  I fear I'd be a coward, and yet I love him so much.

                  Comment


                    #10
                    Even if they can see it, they can't "get it". I remember seeing a woman with MS many, many years ago, when I was first diagnosed.

                    She was being wheeled around town by a carer, and it scared seven shades of etc out of me. I didn't get it. I'd read all about MS. I "knew" what might be in store, but I didn't really know.
                    And I did not want to know.

                    It won't happen to me, but it has. I cannot explain it, just like someone who has cancer can't explain it to someone who hasn't had it.

                    I can explain the burst aneursym, but unless you've had one (Palmtree, methinks) you cannot really describe the experience.

                    Happily, for that you get morphine. For MS you just get the inexorable passage of time.

                    Comment


                      #11
                      Understanding...

                      TheMisses,

                      You shouldn't concern yourself with being understood as much as understanding your friends.

                      And your comments suggest you know this already (other responses point correctly to "you do not get MS until you get it"). Your closest loved ones will NOT get it, especially without visible sx.

                      Lately, I have realized that's it's alright to forgive myself. That there is strength in admitting you are weak. If I can do something I do it, if not, it remains undone.

                      I no longer concern myself regarding being understood. With no worries I do my best... period.

                      I understand all reactions to my affliction and that true friends are doing their best too.

                      Jer

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                        #12
                        This is one wickedly hard to understand illness; its unique to everyone, it does not stay equally good or bad, it has visible and hidden symptoms, even the treatments for it changes per person, so I have grown to accept that there are limits in how well others will understand.

                        What helped my wife to gain some insight; was an MS seminar we went to, seeing and talking to other MSers and several top MS doctors, was a real eye opener.

                        I have not read it, just learned of this book called “The dumbest things smart people say to folks with MS.” On Amazon it gets nearly a 5-star rating, so it may help.

                        Looking back over the people I have known, I’m thinking that is one type of person worst then those you completely don’t get it, and it id those who Think they get it but really have no clue.
                        Give life meaning, live life by the 9 Noble Virtues.

                        Comment


                          #13
                          LOVEBOXERS!!!

                          Double-DITTO!!! It's been 8 months since I was diagnosed. My neurologist told me it's going to take a while to process and you'll be jumping around with different emotions. He's right!!! I've become more isolated and was bubbly and always someone people could count on. I'm divorced with no children and all I can do at this point is to learn and understand my limitations. I'm sure hoping with positivity, knowledge, excersise and better eating habits..........life will let me live again.....not like before........but with more purpose so I can go back to being that dependable person that's missing right now. ANNNNNNNNNNNNNNNNNNNNNNNNNNNNNNNNND.......I just can't stand when they say how good you look. AMEN I'm Done!

                          Susie Q


                          Diagnosed 6-28-14
                          RRMS
                          Alone we can do so little; together we can do so much. ~Helen Keller~

                          Comment


                            #14
                            I am and have been in the same situation. I tried to get people to understand just because my symptoms are not visible doesn't mean I am not having issues.

                            The hard reality is I found out who my real true friends are and also I have tried my best to educate my friends and co-workers. I'm all for trying to educate them but if it falls on deaf ears there isn't
                            anything you will accomplish but making yourself stressed.

                            Sad thing is I had a couple people realize what I was going thru only after they came down with illnesses that affected their lives but couldn't be seen. I would never wish that on anyone but it made me stop and think about changing my attitude about expectations from others. As much as I
                            want people to understand and cut me a break I had to quit letting it get to me when they didn't.

                            As one said, It is what it is. We are the ones that have to look out and take care of ourselves. We spend enough energy on ourselves that it isn't there to defend ourselves against people who probably will never get it.

                            Comment


                              #15
                              D'ya know, before it was visible, and even after it was kind of undeniably visible, I did my level best to pretend nothing much was wrong.
                              No, I'm fine, just hurt my foot a bit. Kid of got a sore back and so on.

                              Now the reality of this disease is long past disguising and with the 20/20 vision of hindsight, it was a mistake to gamely struggle on, without ever telling everyone how bad it was.

                              It takes people a while to catch up. You can't go from oh I'm fine to ooh, I'm using a wheelie walker, suck it up, and when you see the worry and awful sympathy in their eyes you can't blame them.

                              I do believe most people are good people. It is my fault that I did not trust in their inherent decency and unconditional affection for me.

                              It was, in my case, my own unwarranted feelings of shame, not anything from anyone else.

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