Welcome to the guilt

by Sian Gwilym

So I finally got my head around having MS, told my family and am slowly getting around to telling my friends, but suddenly and out of nowhere I am wracked with guilt.

I am feeling so guilty about having MS. And yes, I know this is foolish because I can’t help having MS but I just can’t shake off this overwhelming feeling of guilt no matter how many pep talks (ok, shouty conversations) in front of the mirror I have given myself.

I feel guilty that my husband has to put up, not only with me and my (he says) sometimes irrational moods (the cheek!), but he also has to put up with the fact that I don’t know how I am going to be feeling from one day to the next; that sometimes my grip is so weak, I can’t open the lid of the marmalade (a crisis at breakfast time); that sometimes when I wake up and get up in a hurry, I get so dizzy I crash into the door frame; that sometimes (well actually most of the time) I’m so tired I can hardly speak and conduct conversations in a series of grumpy grunts.

I feel guilty that my son is going to grow up with a mother who can’t promise to go on exciting adventures with because she is so exhausted. I feel bad that instead of doing lots of cultural and learning activities, he is entertained by the television a lot of the time. I feel useless when I see ‘normal’ mothers doing the sorts of things with their children that I should be doing with mine.

Despite all the reassurances from my husband that I’m being silly thinking these things and that it is probably a stage I’ll get through, and the obvious love he and my son have for me, I still can’t help thinking about what a burden I am to them.

And even though I am trying to stay positive, I don’t know what to do to get me out of this guilt-filled world my brain has suddenly found itself in.

So the latest challenge my old friend MS has presented me, is to overcome this feeling I have. Got any tips??

7 Responses to Welcome to the guilt

  1. I am sorry to hear that you are going through the guilt factor that MS brings. Everybody is different, however, guitlt is something that lingers. I have had MS for 19yrs and with the progression of the disease, my two boys getting older and with more energy, and now being unable to work, the guilt has become overwhelming at times. A big part is how one handles the guilt is the key. Good communication with your partner, children, doctors, and friends/family is cruical. Once I told my partner that I could not longer do certain things and that was difficult to do, he became more understanding and right away, “came to the rescue”, made me feel better and we do things together and if I cannot do something, I tell him right away and I do the things I can still do. MS does not make us bad mom’s, just “special”. A “handle with care” kind of mom. I like to have one on one lunch dates with my boys, take them places they like to go, and am an active listner, try to be active in their classroom – when energy allows, and let them have their friends over to the house. Then, I know where they are and I don’t worry, and I always have easy snacks readily available. It is a win win situation and keeps everybody happy. Sure, there is still some guilt, but, not like there was. Good luck, hang in there, and remember, we will have MS for the rest of our lives and there will be good days and bad days, but don’t let MS ruin our souls, our spirit, and/or our life. Chase the guilt away! Take care and stay positive.

  2. MS is mind over body, I was diagnosed over 20 years and my dr can testify that from day 1 I had a positive attitude that MS has my bocy but not ME, I had 4 small children at the time, but my prayer to God was to let me see them graduate High School, now they are all grown with families of there own and doing very well. I walk in my healing everyday because I know a cure will someday be found, until then inspite of the fatigue and limited agendas at times, I hold down a full time job — find out when your high energy times are work on that schedule. YOU CAN DO IT! My motto is “Forward Without Fear” and it has sustained me thus far.

  3. Thank you fo sharing this, I feel exactly the same way that you do. I have a small baby and luckily my husbands aunt has moved in with us to help out but there are so many days that I feel like I am failing everyone around me. I have a great husband and good support system but I feel guilty more than not. I also have fibromyalgia, and sjogrens and not enough Braun energy at the end of the day to keep explaining myself to family and friends whats wrong with me again and again. So sick of feeling sick and look forward everyday to spending any and all time i can with my son and husband.

  4. My husband was diagnosed 8 years ago. Your husband loves you, you are not a burden. You would do the same for him, right? We have three children and while they are sad their dad has this and want a cure for him, they are stronger, more compassionate people for living in a house with a chronic illness. They respect him even more because they know the sacrifices and the inner strength he has. Please do not feel guilty, show your family what it means to be strong and how not to allow an illness to make you a victim. You are valuable for who you are, not for what you can do for them. Hugs and prayers coming your way.

  5. I severly struggled with this immediately following my diagnosis and for several months thereafter. I felt immense guilt each time I was feeling bad, which was fairly often. Eventually I just stopped caring. If anyone is low enough to judge me or make faulty assumptions when I am aT my worst, it is too bad and truly a shame. My husband said the same, “honey, you should not feel bad and I do not mind taking care of you!” However he is only human, so I try to do small, non-energy draining things for him to let him know how much I appreciate all that he does for me. Such as buying a book I think he will enjoy or cooking his favorite dish. I also will try to do more things with him that HE will enjoy, such as watching his favorite show or going for a ride with him to his favorite spot in our city. This seems to ease my guilt and also makes him so happy and strengthens our relationship. We always have a great time as well!
    Just know that YOU are doing all the things you should be doing and more, and you’re family is lucky to have someone who cares about them so much.

  6. My tip(s!) is to focus on what you CAN do rather than what you CAN’T. You can give your son a loving mother who will always try to do what’s best for him. You can forge a stronger relationship with your husband which will hopefully stand you in good stead for anything which may be around the corner. Think about different ways of doing things so you can still have the family life you want. So for example, do your grocery shopping online so that you can use the saved energy to have an extra hour of playtime with your son. Ask your husband to swap some of the things he does which you can manage, for things you can’t manage any more, so you don’t feel like you’re a burden. You’re just sharing the tasks out differently. And above all remember that having MS does not make you a bad mother!