Facing MS “guilt”

“Oh, I’m sorry, am I in your way?” “I’m sorry, could you hold that door?” “I’m sorry to bother you, but could you help me reach that cup?” “I’m sorry to hold you up, but could you help me to the bathroom before you go out?” “I’m sorry, I’m just having a bad day and I’m moving kind of slow.” Enough already! What exactly am I apologizing for? Having multiple sclerosis? What is wrong with that picture?

When a chronic illness like MS barges into your life and the lives of those around you, it opens the door for negative emotions such as resentment, self-pity and guilt, to name just a few. Now, guilt can be a good thing—in moderation. It keeps us on the right road at times, but feeling guilty because one has MS is ridiculous. And yet, I am sorry to say, I do. I feel guilty.

I feel guilty that I cannot be more of a help to my family, especially my husband. We used to have a partnership and I can’t hold up my end. As my ability to manage the activities of a busy household decreases, his plate of responsibilities gets fuller. Sometimes, things even fall off. When it gets to this point, my dear husband is exhausted, frustrated and overwhelmed. I tell him how sorry I am for causing more work. The obligatory “It’s not your fault” is spoken and we try to get the wayward pieces of our life back on the plate.

Intellectually, I know it is truly not my fault for having MS, even though a close family member asked me upon learning my diagnosis what I had done to deserve it. I asked her what kind of hideous deed would someone have to do to deserve MS? Well, that conversation mercifully came to an abrupt end. That was a long time ago and the person has been a great help to me ever since, but emotionally her question still haunts my thoughts. Do you feel guilty that you have MS? Do you find yourself apologizing a little too much?
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Susan

Susan Skoney, Blogger

Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and daughter Hannah. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

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    83 Comments

  • Lisa H   Aug 20, 2013 12:48 PM
    My mother has MS and is always apologizing. It drives me nuts and I tell her so! I am glad that you brought this to my attention so that I can be more patient.
  • Becky   Aug 20, 2013 12:57 PM
    Society makes us feel guilty. We are required to continually justify and prove we are "sick" in order to get the help we truly need. If we were not made to feel the need to apologize, I think we would not as much. Until that changes we will carry our guilt, apologizing along the way.
  • Kimberly Gamble   Aug 20, 2013 12:59 PM
    As I have just been newly diagnosed and am trying to settle into these life changes, I find myself apologizing to everyone around me for my short comings. My fiancé works hard everyday to support myself and our girls and I take care of this house, meals, kids, etc. there are times that I can't even do my daily tasks and he comes home to pick up the pieces after working hard all day in the heat. I feel like I have dropped my end of the ball here. He always tells me that I didn't ask for this and I shouldn't be sorry for needing help, but I know that it's taking a toll on him as well as the girls. How do you get past this guilt?
  • TAMMY THOMAS   Aug 20, 2013 1:01 PM
    As I was reading your comments, I thought, I was reading about myself! Too often, I actually apologize for having MS, and I feel badly that my wheelchair is in people's way, or taking too long to pay for something, because my hands don't work the way I'd like them to. Why do I feel guilty? I don't know, it's not as if I asked for this despicable disease. I'm gonna think about this, because until I read your article, I didn't realize I do this almost everyday, so I want to thank you so much! Wishing you well. Tammy Thomas :)
  • Patti Scheefers   Aug 20, 2013 1:10 PM
    No, I don't feel guilty about asking for help or for being slow. I do express my consideration of others and my politeness many times with I hate to bother you or I am sorry to ask this. I am a southern woman who was raised with great manners and to always consider others knowing that what goes around comes around. I have never felt guilty over my M.S. nor have I ever felt like a victim. We each have challenges in this life. This just happens to be mine. I do pray for all those who have M.S. and other chronic diseases as well as cancer. I pray for a cure and I pray for the strength and courage to fight the fight and hold their head up high knowing they are doing the best they can at that moment. I am not a saint. I have not arrived. I have had my Poor Patti Pity Parties from time to time. I just choose to be happy no matter my circumstances and that includes having more than a third of my organs removed last summer. This may not make it on the blog responses but that's ok because I know that someone saw this who may have needed to see it. Thanks!
  • Gerald Ponder   Aug 20, 2013 1:11 PM
    Our role are the reverse of Susan's. I'm the once robust and useful husband in our one-time partnership, and my wife has become the caregiver and trusted partner-in-chief. I do apologize more than is rational or reasonable. But my apologies are not entirely for the troubles my MS causes me, my lovely wife, and others. One of the "angels" of having MS is the discovery of how truly wonderful many people can be. Instead--or maybe as well as--my apologies contain regrets for the life my caregiver deserves and is now deprived of, grief over a life and identity as a partner and playmate once cherished and now gone, and the fact that I now am MIA and not present in our lives enough because I allow the hurdles of MS to preoccupy me too much. If these complex feelings describe the MSGuilt of others, I hope some folks living with or caring for an MS person can hear these nuanced apologies and realize that, while we don't wish to complain and apologize so much, our whines are often a mantra that say far more than "I'm sorry." Best to you all.
  • Terrie Holmes   Aug 20, 2013 1:11 PM
    I WISH I had this problem! I was diagnosed 20 years ago and I still thing my family is in denial. I cook, clean, babysit , I get no sympathy or understanding. I feel like I embarrass them!
  • skg  Aug 20, 2013 1:16 PM
    We all know it is not our fault that we have MS, but it is hard not to feel badly for the way it impacts our family and friends. While I understand that my family and friends want to help, that need becomes burdensome in many ways, especially to my husband. My MS is not his fault, either.

    I certainly don't fell the need to apologize to strangers (as in they have to wait for me in the grocery store), but I do need to make sure that my family and close friends understand that I am sorry they are affected by my illness. I am so glad they love me enough that it just doesn't matter.
  • Tora29  Aug 20, 2013 1:18 PM
    I feel exactly the same. Guilty for not being the kind of active mum I used to be and still want to be. I feel guilty for everything and will apologise for everything even though its out of my control. Thank you for hi-lighting this issue. Xx
  • Ilja   Aug 20, 2013 1:19 PM
    I do recognize this as much as the other readers of your story. I was diagnosed with MS last year. I had symptoms from 1999 on. In the beginning I was kind of happy that there was an explanation. But now it's getting worse and I say sorry too many times I realize again after reading your blog. Thanks!
  • Leanne   Aug 20, 2013 1:32 PM
    Im sorry that I lost the job I spent Years and a lot of money for school to this disease> Im sorry you think I look fine when my brain and legs won't work together. Im sorry to be a burdon, though you say it is not so. Im sorry that Im sorry.
  • tammy   Aug 20, 2013 1:36 PM
    I find myself saying im sorry all the time
    Because im not myself, like im fatigued on
    Purpose. I blame myself not my ms luckily
    my boyfriend tells me its not my fault its the
    Ms
  • Tracy   Aug 20, 2013 1:36 PM
    Yes, I do this. I am the one who takes care of everything around the house. I apologize for not getting things done when I have a bad day. I apologize for being too tired to cook for when he gets home. He doesn't blame me but does seem frustrated at times. It seems like sometimes he forgets I have MS. I do not mean to complain. When I can I push myself, usually too far, or I feel guilty. It does not usually end well. I have fallen and broken things and just strained things. It is the guilt, I think that makes me do this.
  • Amy   Aug 20, 2013 1:41 PM
    Being a southern lady I have SUCH a bad habit of apologizing. I say (way too often) that I am sorry for my faults, I'm sorry for other people's sad problems. Occasionally I tell people, while being angry at them that I am sorry for their bad manners lol.
  • Brad Reiss   Aug 20, 2013 1:43 PM
    well put
  • Niecey   Aug 20, 2013 1:45 PM
    Get sick of family and friends telling me not to get frustrated when I can't do something physical. :/
  • Olafur Karlsson   Aug 20, 2013 1:45 PM
    I appologize for not having any energy like I used to. . People around wont hear of it and let me feel good about the things I CAN DO.
    Thank you for your storu.
  • Mary Kellerbauer   Aug 20, 2013 1:49 PM
    I do feel upset that I can not do or contribute to family like I did before. I do appologize sometimes when I shouldn't. i hopefully am ultimately balanced. I have never felt that I did something wrong to deserve this. I am one of the odd birds that am thankful. I pay attention to being healthy and taking care of myself, now, unlike before MS.
  • Mary Kellerbauer   Aug 20, 2013 1:49 PM
    I do feel upset that I can not do or contribute to family like I did before. I do appologize sometimes when I shouldn't. i hopefully am ultimately balanced. I have never felt that I did something wrong to deserve this. I am one of the odd birds that am thankful. I pay attention to being healthy and taking care of myself, now, unlike before MS.
  • Kimberly Radomski   Aug 20, 2013 1:49 PM
    Yes, I do, and I find it difficlt to say Im sorry that Im having a bad day today too.
  • ellie   Aug 20, 2013 2:09 PM
    Good article. At 78 living for Decades with MS and having been a physical therapist I still say I'm sorry! It's still hard to see others take up some of your load. Part of my problem is I keep doing too much then crash and everyone feels guilty about not helping me more . And I feel guilty that I inadvertently made them feel that way! Yet their still proud of me that I keep doing!!
  • Avatar
    Bobo  Aug 20, 2013 2:16 PM
    Wow, appreciate all the other comments! We are a "sorry" lot some days. There are days I do pretty much what I've planned to accomplish, and other days that I don't. When I tell my husband I'm sorry, he looks at me and says, "It's my turn to take care of things!" I am blessed with a wonderful husband and wonderful friends who accept what I can do. Cheers.
  • Karen   Aug 20, 2013 2:38 PM
    I have been battling MS for 20+ yrs. I'm over the guilt part, now the fatigue bothers me.
  • Sally   Aug 20, 2013 2:48 PM
    I apologize mostly to my family. In public I try to stay out of situations where I would hold up lines, sales clerks, cross walks, etc. But there is no way to keep this disease from effecting my family life. I feel the worst when we try to schedule family activities and I am just too weak and exhausted to go along with them. My poor husband misses community events or attends alone. It makes me feel like an absent wife :(
  • Frank   Aug 20, 2013 2:49 PM
    I have apologized, but sometimes it seem like no one cares.
  • Heather L. Longacker   Aug 20, 2013 3:20 PM
    I'm 37 years old and recently diagnosed with PPMS after more than 10 years of confusing symptoms and inappropriate, and many times unnecessary, treatment. I had a rewarding career as a speech pathologist at a rehabilitation hospital treating patients with traumatic brain injury, and ironically, MS, that I had to leave due to disability I have gone from being the therapist to being a patient. This transition has given me a very unique view that I am thankful to have and hope to be able to use again to help others one day. I am lucky to have a wonderful support system including a loving and supportive husband and 3 young children who have taken it all in stride. Here comes the but...but I feel guilty all the time! I am not the person my husband married, not the mother I think my children deserved to have and I am constantly apologizing to everyone in my life, including strangers. My adjustment to my new life has been hard. But as another commenter wrote, I am also so thankful for being able to see how much I am truly loved and supported by my family and friends. I am learning to own who I am and not feel the need to apologize for slow movement and thought or the need to put aside activities I once did with ease to manage my energy. It's something I must practice every day.
  • christine paquette   Aug 20, 2013 3:21 PM
    i say i'm sorry quite often ... i cannot do thing the way i used to and cannot remember as well either ... my family gets aggrivated a lot , but there is nothing i can do about it
  • sue   Aug 20, 2013 3:25 PM
    Patti Scheefers I couldn`t help but notice you said you lost 1/3 of your organs. Why is that? I too have ms & I have good days & bad days but I manage as best I can..I have always been independent, but this is changing all that. I am sorry to say, but hey I am living with it..I have ms, it doesn`t have me!
  • Celeste   Aug 20, 2013 3:26 PM
    Newly diagnosed after 15 years of struggling with vague or random symptoms--I find that I DO feel guilty for having MS. A friend asked me in the middle of my quest for an answer for my symptoms, if I "wanted" to have MS. Of course not! NO ONE wants to have this disease. Nevertheless, I feel compelled to apologize as if I did this to myself. I feel that I am a burden and I apologize for that often. My dear husband, however,tells me that even though I can't do what I used to, I still contribute to our partnership "so stop apologizing!"
  • LAURIE ELISE GARVIN   Aug 20, 2013 3:36 PM
    I was diagnosed in my late twenties. There was tingling in my right leg and after a few weeks I went to my primary care doctor and he said it could be MS. I went thru the proper testing.

    I earned two degrees in music education....Taught as well as directed church choirs and performed.

    Almost 20 years later the legs are contracted and now living in a skilled facility.

    My blog is NORWESTERNVIEWS
  • JoanneF   Aug 20, 2013 4:22 PM
    Gosh, I have never apologized for anything I felt was MS related. Surely have been frustrated, felt like a bit of a.burden but never felt like I owed an apology. Golly, I never asked for this. My biggest problem is that I have spent two years trying to be the person I used to be and only recently came to understand that what I need to do is to reinvent myself
  • JoanneF   Aug 20, 2013 4:22 PM
    Gosh, I have never apologized for anything I felt was MS related. Surely have been frustrated, felt like a bit of a.burden but never felt like I owed an apology. Golly, I never asked for this. My biggest problem is that I have spent two years trying to be the person I used to be and only recently came to understand that what I need to do is to reinvent myself
  • Lisa Gilbert   Aug 20, 2013 4:33 PM
    I don't really know where to start... I 've been apologizing for having MS for almost 20 years! and I continue feeling the need to apologize on a daily basis... because im treated by everyone I know as an inconvenience! oddly enough, as time has gone on, my "support system" of friends and family has dwindled and dwindled. I can name ONE PERSON who I never feel the need to apologize to for my MS. I got MS when I was about 11 years old and finally diagnosed in 1994 at 13 years old. I met that ONE PERSON in 2003 and am very lucky and thankful for the feeling of true unconditional friendship. it must be nice for the non-MSers to be able to pick and choose the days they feel like dealing with me...I mean, deal with my MS
  • Karen   Aug 20, 2013 4:55 PM
    I do apologize often, just as I am slow to accept help from those who offer. I have alot of remorse about how my MS has made life difficult for my son and father. Not guilt, extreme sadness.
  • Lisa   Aug 20, 2013 5:11 PM
    I still try to hike with a cane in hand. I get on narrow trails and able bodied hikers are held up by me. I step to the side of the trail and say I'm sorry. I apologize constantly while hiking.
  • Thanks for your thoughts, I appreciate them, however when I think of it I have always as a matter of courtesy said I am sorry like pardon me as I bump or make people move out of the way.   Aug 20, 2013 5:16 PM
    Glad to share:)
  • Pam   Aug 20, 2013 5:21 PM
    This could not have hit home for me more than if you looked at my life right now. Thank you for this comment. It is very much appreciated.
  • sharons  Aug 20, 2013 6:16 PM
    you are so right. I feel guilty for not being able to do what I used to be able to do, as I can only watch. I guess it's because we're "doers" and not "takers" Don't think I'll ever get used to it.
  • Alexa   Aug 20, 2013 7:47 PM
    My first trip to my psychologist after my diagnosis, she asked me how much support I had. I replied that my husband and my family were great, but I hated that they had to take care of all the things I should be doing. She said "Do you thank them?" and I followed with "Yes and I tell them I'm sorry that you had to take care of that." She then said "Do you think that they don't want to help you? If they are happy to help why are you sorry that they do?". I finally said it out loud...I apologize a lot. We didn't chose this path. We have nothing to be sorry for. I now say "Thank you. I appreciate that."
  • nikki   Aug 20, 2013 9:11 PM
    I can fully relate to the feelings of guilt, my problem is that when I get worse everyone acts like things are fine and I am left trying to pull it together for them. It seems that everyone forgets that I am the one with MS and if they ignore it it will go away. Well folks, I hate to tell you, but it ain't going away.
  • Suzanne Frye   Aug 20, 2013 9:24 PM
    How appropriate this topic is! I find myself apologizing often for those things I need help with as I try to maintain my independence. And returning to the workforce soon, argh! A whole new group of folks I will want to apologize to....I hope time and exposure makes it easier for me to both ask for, and accept, help without the guilt.
  • Suzanne Frye   Aug 20, 2013 9:25 PM
    How appropriate this topic is! I find myself apologizing often for those things I need help with as I try to maintain my independence. And returning to the workforce soon, argh! A whole new group of folks I will want to apologize to....I hope time and exposure makes it easier for me to both ask for, and accept, help without the guilt.
  • Lisa   Aug 20, 2013 10:02 PM
    I cannot agree more about feeling guilty. Even though my family & friends tell me the customary "it's not your fault", etc. There isn't anything that can be done or said to lessen or replace the guilt I feel. It truly is amazing how much guilt, frustration and helplessness a person can feel.
  • ellis   Aug 20, 2013 10:06 PM
    I am a 19 years old female, and I was diagnosed with MS back in 2012.
    Of course, there were times I was warded because of my weak body, I got infections and ills. My parents had to drive 6 hours to where I am studying at, just to care for me at the hospital. I wouldn't stop saying i was sorry i got sick , but my mum assured me it was okay.

    I still do feel guilty. Usually it's the child who takes care of their parents, but now it's the opposite for me. It was like a slap to the face. I feel so bad for burdening my family.
  • Daniel   Aug 21, 2013 3:45 AM
    no i don't as much as I once did, but I do find myself trying to rush thru things not to hold people up do to feeling guilty. I guess, being shy does help a bit due to the fact that I do feel sorry inside, and often put up a happy face even thou I am not, guess I'm lying to myself in away.
  • Cynthia Gibeau-Goldin   Aug 21, 2013 7:01 AM
    I am newly diagnosed and have difficulty with my speech, constantly word searching and saying the wrong word. I am also constantly apologizing for it. I was grocery shopping and met a young woman who was sitting on the seat of her walker trying to move it out of the middle of the isle with her legs. She apologized to me for blocking the isle and said that she had MS and sometimes her legs did not co-operate. I told her that I too had MS. She smiled at me and asked me to help her because she knew I would understand. She made me realize how tired I was of “apologizing”. I am a woman, a social worker, and a Boston area resident, and I am also MS STRONG! It is not what I cannot do that will define me; it is what I am going to do: raise awareness of what MS is and the effect it can have on someone’s life.
  • Clive   Aug 21, 2013 7:28 AM
    Reading this blog I totally understand how MS changes your life. However at times I think you have to be living with the condition to understand what life is like with MS. That is why I think sites like this and Facebook are a great way of sharing information on MS and making people aware of MS and the diversity of Symptoms people have. It was for that reason that I started Tim the MS Bear Community on Facebook. I hope by doing so that more people will be made aware of MS.
  • Kathy   Aug 21, 2013 9:35 AM
    I always apologize & then I feel the need to explain that I have MS. Ugh. It's been almost 24 years since my dx. & I still apologize. I might just sorry that I have MS. Hummmm, maybe?
  • Bruce   Aug 21, 2013 10:21 AM
    I never knew there could be guilt. I guess that would make sense.
    I know there is shame how your children feel or your ex spouse.

    I know MS is no fun and its something I wish nobody ever had to
    face.
  • Tari Smith   Aug 21, 2013 4:19 PM
    I have had progressive ms for 8 years. Both my sister and my husband say I apologize too much. It seems I am always saying I am sorry! I worked in customer service for 10 years in a city utility office. I took retirement when my brain was not cooperating any more. My memory is terrible and I seem to be very forgetful. glad you wrote, I did not know anyone else had this problem.
  • BJ   Aug 21, 2013 5:54 PM
    I do ask for help, I don't apologize, but I am polite, and give compliments. I am always on the offense, not defense-I look them in the eye, smile, say hi first.
    Talk about the weather, the items on a store shelf, or make a small joke. It's my world too, not just not for people who walk.
  • Arlene   Aug 21, 2013 7:29 PM
    I just spent 3.5 weeks alone in a cabin on the Olympic Penninsula in WA state. What I learned was that there are really nice people out there, and that I could survive with my dog, and not my husband of 35 years who is my primary giver. I had to work hard to not say 'I'm sorry' for being slow, needing help getting in the car, etc, etc. Thank you for pointing this out to us, we don't need to apologize for something we didn't ask for.
  • Arlene   Aug 21, 2013 7:34 PM
    It's better just to say 'thank you' when somebody helps. I use a walker more and more, have an electric scooter, and a cane. Usually people will help with doors etc, it's better just to say 'thank you.
  • amy99  Aug 21, 2013 8:30 PM
    I say I'm sorry for forgetting names & not being able to do things I could before. Things people used to depend on me to do for them. Mostly I don't say I have MS. I let people think its an age thing so they will not expect it to 'get better' or tell its because of diet cola . . .
  • amy99  Aug 21, 2013 8:30 PM
    I say I'm sorry for forgetting names & not being able to do things I could before. Things people used to depend on me to do for them. Mostly I don't say I have MS. I let people think its an age thing so they will not expect it to 'get better' or tell its because of diet cola . . .
  • Lexi   Aug 22, 2013 10:53 AM
    I have had MS for 23 years and I'm sick of my own family who doesn't address this. My friends give me more support. How sad it is, but after all this time I expect no less.
  • Isabel   Aug 29, 2013 8:01 AM
    Thank you for your post!
    I feel guilty that I don't have as much energy for my children as I would like to, I feel guilty that my husband has to do so much sometimes, I feel guilty at work, not being able to perform as well as I should, for not being a good friend all the time, etc.
  • Eric   Aug 29, 2013 8:02 AM
    I ditto what Lisa H said above about her mother. I too find myself telling my mother to stop apologizing and just tell us what she needs, we're happy to help. I'm glad you posted this as I will also try to be more patient.
  • Suzanne   Aug 29, 2013 8:05 AM
    The main thing I find myself apologizing for is when we have to rearrange plans to deal with my heat sensitivity. Something as simple as promising my kids they can help me wash the car when they get home will need to be postponed to another day when it turns out to be 95 degrees outside and too hot for my MS heat sensitivity issues. I know that it's really not a big deal ... but my children aren't yet old enough to really understand and I feel bad that it seems like I'm breaking my promises. I know when they are older it will be different.
  • Cynthia Jones   Aug 29, 2013 8:17 AM
    I do feel guilty all the time! I feel like let the people around me down often because I can't juggle things the way I used to. I always prided myself in being able to do many things and doing them well. I have home schooled my children, volunteered as a 4-H leader, led projects, led Bible studies, hosted get togethers, always had a tidy, organized home, healthy balance meals, and now I feel like I'm failing in all areas. It's hard when others start to notice the difference too. I don't like it. I want to be my old self again. Not this "new normal" person who can't do all the things I love. I don't like feeling sorry for myself it's not who I am. I'm the one who supports and helps others. I like helping, leading, teaching, loving. I'm apologizing a lot because I feel so bad for letting others down.
  • Garbiela Moran   Aug 29, 2013 8:27 AM
    It's coming up to a year since my diagnosis. So many of you having been living with this disease for years and I have been living with it for about 4 years. I'm always apologising for falling over, or for losing my grip on that glass. I apologise to the ones that I love because, like you, it feels like they have to work harder where I should be, and I can't and its frustrating, and then i apologise again for being sad, but it's not something we can control, it's human nature to feel needed, but i don't feel as needed as i used to, i don't feel as useful either. The whole thing is just depressing. When I heard I had MS I asked myself, why me? what did I do to deserve this? And then I said, why not me? why does it have to be someone else over me? Anyone else? What makes me so special that fate or life would have me not ever get sick? I'm just a regular girl, with regular problems. Having lived my sheltered life with my first world problems, I know what real problems are now. I just wish I could do more to help ease the burden of this disease on my family too.
  • Clara   Aug 29, 2013 9:43 AM
    I was diagnosed in 2001. Here I am today having to go thru all of the testing because I moved from New Orleans to North Carolina. Please tell me why these crazy Dr's do not believe what the patient tells them, what other Dr.'s have told me. How I feel, the up's and down's of daily living. He wants to re-evaluate my condition. Maybe I have a different problem, we have new spinal tap procedures, the tap will not hurt. BS Why do I have to defend myself. As you can see, I am real upset. Oh happy day!
  • Hartigan John   Aug 29, 2013 9:58 AM
    That's how it is...I can't help but feel so guilty about it. I fight between the wish that they understand how difficult life has become and my desire to act like I don't have anything.
  • Fiona   Aug 29, 2013 2:26 PM
    I was diagnosed last year, and I do often say sorry to those who are close to me for all their help, I know its not my fault that I got ill but it feels like I'm taking advantage when this is not the case, I also feel guilty for having to rely on the government for help as I with a lot of symptons I have it isn't possible for me to work, but I was made to feel like I didn't matter to them and had to fight to save my money, but isn't it there to help us, instead I feel like I'm scrounging off the government when it is clearly not the case......
  • Jakub   Aug 30, 2013 2:51 AM
    Well I don't feel guilty, but I have different problem. I'm single. Im ok now, but I could have some problems in the future because of MS. For this reason I'm not looking for any partner. I'm a potential burden for the partner so, knowing this, how could I be willingly looking for one? Am I crazy thinking about it in this way?
  • Isabel   Aug 30, 2013 3:53 AM
    No Jakub, you are very sane but you shouldn't be so pessimistic. Even with MS, there's so much one can bring to their partner!
    I was diagnosed in 1998 (age 18), I'm still mostly ok and married with two children even though I used to think like you ;)
    Do not abandon all your projects, even if you may end up feeling guilty for many things!
  • Jakub   Sep 1, 2013 4:30 AM
    Isabel: Thanks for your reply. It's good to know it can work just fine. Well I'm working on my projects, I'd say I'm even more active and happier than I was before the diagnosis. Looking for a partner is the only "project" I have some problems with. I'll have to work on changing my attitude to this subject. Thanks again for your words of encouragement.
  • HELLO   Sep 4, 2013 11:15 AM
    We with MS all have a sense of quilt at times, or all the time , or from the onset, or even some not at all. Everyones's circumstances are different, hope mine help. I found it has been a blessing to me, not a quilt sentence. I do understand your statement. My husband divorced me when we found out my diagnosis in 1992.
    I was blessed to know the person I was married to could not live up to his marriage vows, (for better or worse). Better sooner than later. I went through 10 years of pain, from that rejection, lose of the person I was without MS, my career I had to give up and the MS. What a waste of precious time , I and only I let myself do. First I have faith, and give my problems to my master physician above. I tell everyone I am healed from MS, because I turned it over to Jesus first, and do my part by doing theDMT's, since 1994. Betesaron , avonex, rebif, steroids, now tysabri. I am physically, spiritually, emotionally (some dpression from time to time, so I stay on Wellbutrin until the day comes I know I don,t ever need it. That does not mean I don't have faith in Jesus. Just means I am using the resoures he blessed me with in need. I do have my down days, and wrestle with the fact that I got MS, and have my pity party, I do practice not to stay there long, and bring anyone (friends, family, strangers, etc.). down with me. I do except a little sympathized understanding from anyone, just human nature, but enough is enough, so I do not let anyone dwell on it , for it will bore me. They know me by now, so I give them credit, they are doing better.


    Brough it down to no need to bother, they know I know we already care, and love each other. I refuse to be felt sorry for because of MS. I do give have the Motivator mailed to all my family, so they can educate themselves, and it does not have to be always what the converstion is about, and we can live with whatever we have, better understanding (2 sister,s , dad, got diabeties. i epilepsy, dad cancer, mom heart disease, and sister,s, mom and I have thyroid issues, and arthritus, brother psirosis, 4 hav high blood pressure I have study and learned about it all, could do more,) I am not quilty, or ashamed of what I have , neither do I feel Jesus made me this way, or is punishing me from some sin I probably have done.
    We with MS, I beleive do learn another understanding in life than those without because we have more knowledge of a different exprience, than most don,t.This includes people with MDS, Lupus, diabetis, Cancer, fibromalgia, depression,etc.. Stay strong U are blessed , lot's of blessings and more coming. take one day at a time, love yourself. no matter. WE can help others by staying positive no matter what our MS outcome may , or may not be. Jesus is with us, and he will walk us through each day. Gotta stop now. I could go on all day. OH, yes the best of all, I started caring more about my relationship, with Jesus, (20 yrs, ago)and desiring to figure it out myself, not just one day at church. I am praying for a new career. I will share it with all. I pray God will bless me and I am excited about it. I am going to Charis bible college At Woodlabd,l Co.Springs. for 2 years, and I need to minister to the young between 20 and 40, for I feel they are some like I was. Don't really understand about Jesus, because of not being brought up in christian, or church, or understand the word. May the word be with . GOG BLESS.
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    sathom13  Sep 9, 2013 8:21 PM
    Absolutely... I fear my husband is going to get tired of hearing me constantly apologizing for this or for that. He got himself a 'broken' wife.

    Time i can only assume will make this feeling hopefully wane.
  • princefan  Sep 16, 2013 9:24 PM
    Wow! Lots of comments that sound like I wrote them! I too feel very guilty for not being able to work on a specific day or not physically being able to keep up with my husband. There are days I just want to relax and sleep (that's what my body wants to do anyway lol) and i feel like I'll miss out on something. While my husband continues his life without me attending whatever the event is. So, in order for me to keep up I go and regret it usually later. My husband tries to support me emotionally the best he can and doesn't want me to try and keep up. I too, feel like a defective wife. He thinks otherwise. Living with and having MS is very very difficult...
  • princefan  Sep 16, 2013 9:40 PM
    Has anyone else had this problem? When I park in the handicap parking spots.. I'm so sick and tired of people being telling me to "stop using your grandmother's placard" or "stop using your mother's placard". I've also had people leave really nasty notes on my car as well. People assume just because i walk ok or THEY don't notice anything wrong, I shouldn't need that spot. I hate it!! I hate that people are so rude and assume i'm fine! Does this happen to anyone else when you park in a handicap spot? I'm just curious...
  • Judith Sherman   Sep 17, 2013 4:52 PM
    Yes, I also have the apologitis. So much of our self esteem is tied up in what we do. Is this illness not also about learning to slow down? We, as a group, seem to over function. And then, bam, we get the inability to do. I really try to watch my words/thoughts. Surely our worth is greater than our energy?
  • Kathy   Sep 18, 2013 8:57 PM
    Princefan - I have had people question me about parking in a handicap spot. My reply is they can gladly have my placard but they have to take my MS with it....
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    Quaker  Sep 29, 2013 6:28 PM
    I know what you mean....A lot of times my guilt causes me to go ahead and do something that I know I should not do. Like mow the lawn. ect.
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    mwehner_2005  Oct 3, 2013 8:52 PM
    In response to [Kathy Sep 18, 2013 8:57 PM] & [princefan Sep 16, 2013 9:40 P]:

    princefan - I'm glad you addressed the subject of Handicap Placards. I am guilty of being one of the accusers to the walking handicap not being handicapped. I never voiced it, but I'm sure it was seen by the way I was looking at them. Until my recent dx, I was clueless. ....... My father was a perfectly healthy man who used his mother-in-law's HC Placard, and it annoyed the crap out of me. Annoy is mild. I felt he was being disrespectful and dishonorable. So in my mind, when I saw someone walking from their car, If I didn't see them assist a handicapped family member, I made the erroneous conclusion they were my father. And in my mind, I was protecting the "real" handicapped. I wasn't doing it with bad intentions at all - I was simply ignorant to what being handicapped was. Thank you for bringing me to the other side of the story - have learned three things: 1. I will never again make that assumption, 2. I owe a HUGE and very sincere apology to all those I had accused with my eyes, & 3. I am going to educate my father on my feelings of his practice, and why I feel that way. And for Kathy - thank you for sharing your response - I love it and will use it when the need arises :-)
  • Heidi Gudrun Weber   Jan 30, 2016 4:58 AM
    Oh Yes, "I am sorry" time is long, long ago gone. I decided, a conscious decision, a live changing moment similar to a marriage to live a positive life with MS. MS is closer to me than my children, husband and friends. I cope with my tangled mind, incapable legs my way. A co-existance with my Art... Expressing myself triumphs over MS.
  • Anita   Sep 18, 2016 6:01 PM
    Hi, I came across your post that was written 3 years ago. I have had MS for about 15 years now. I'm in my early 50s. I am at the point of hating life. Everyday it is the same thing. Get up do next to nothing, sit and wait around for help because you can't do much for yourself or for others. Always sorry because everyone has to pick up jobs that were once yours. My 83 year old mother comes weekly to help me clean the house. My husband has to help meal prep because just can't cut and prep anymore. I can't grocery shop anymore, as need help pushing cart, let alone bagging and unpacking etc etc. My world gas become a big apology to everyone I meet. I am sorry, having a real pitty party myself today. MS is a slow, slow prison sentence as far as I see it.
  • Meghan   Oct 25, 2016 1:33 PM
    I once had a relative tell other family members I had MS because I dyed my hair dark... I had another relative tell me I have MS because I didn't get enough sun one summer after a sports injury when I was younger. Even when I'm not feeling well I'll make sure we don't park in handicapped parking because I just cant deal with the snide remarks that might come with that. My cognitive problems make me too sensitive to other people's comments, whether they are intentional or not. This is why I am anti-social and withdrawn.
  • Peggy   Nov 8, 2016 1:29 PM
    It is good to know that I am not the only one that feels this way , In my life I have a fiancé and this has completely taken me out of the working world , I can no longer make money ! I try my best to take care of home cleaning organizing groceries. Since it's all I can really do , And I seem to mess up so much ! It is hard when you used to have control over everything and then some , And you get knocked down to doubts and guilt and you fell way less than you were ! How can someone continue to feel the same for you ? My fiancé has his daughter to worry about financially and it's a burden on him too ! I wish that I could help him ! He is so stressed ! He takes it out on me , But that's what humans do . I just want to help But learned that I just cannot . I don't know what is going to happen , But this is a whole new world for me ! I pray for him
  • CHRISTINE HEMMERLING   Aug 13, 2017 4:36 AM
    Thank you for helping ma in a predicament that I am in at this time of dealing with Multiple Sclerosis.
  • Maryann Pidwysocky   May 9, 2018 12:46 AM
    Hi Susan,
    The statement I make is MS has my husband, not the other way around.
    As his wife there are moments where he gets depressed and cries because we couldn't have children. It's not that we didn't want to but he was concerned he would pass on what he has to his offspring. The only time we really talked about children was when we were living in Quebec but he didn't want to have kids because of the politics etc.
    After we moved to another city, and years later he was diagnosed, my time clock actually stopped. My husband realize you didn't want to pass on his disease to his offspring. And it got to a point ( call me selfish) but the way the world is today, my desire to have children stopped.
    We have talked about this before but if you want to see a while he gets upset and brings it up again. I don't know what to say anymore.
  • Jeanne   Sep 26, 2018 10:20 PM
    I do apologize for having MS. The diagnosis came after 2 days in the hospital after suffering a bad bout of vertigo at work. I gave my common law husband the option of walking away and I would not think any less of him for it. I feel guilty that he has to pitch in more at work, I feel like a burden to the man who works a hard day in construction then has to come home and cover for my inability to now keep up with a regular routine. I used to be able tp get by on 4 hours sleep and now I can barely function after 10 hours of sleep. I feel guilty that I no longer can keep up as a mom to a 10 and 13 year old. I feel guilty that my friends now feel uncomfortable around me. I feel guilty that my elderly mother constantly worries about me......I feel guilty that I am angry that my life as I knew it has ended.
  • Stefanie   Dec 19, 2018 10:52 AM
    I've starting blogging about living with ms and by releasing emotions through typing my feelings, I've come to realize I have a tremendous amount of guilt and depression.