Telling our family

I've waited to tell my grown adult children, who live in another state, about the MS. I wanted to talk with the neurologist just to be sure of the diagnosis before telling them. My daughter has two small children and her husband was deployed in September for a year. She understandably is already overwhelmed, yet I didn't want her to find out from someone else or feel hurt and angry that I was keeping something from her. There seemed no good time to tell her. I finally told her and her brother a couple of days ago. She is devastated, though I tried to put every possible positive spin on it I could.

How have your family members or friends responded to your diagnosis, and did you find ways to soften the blow? I know it will take time for her to deal with it, but my encouragement isn't helping much so far.

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  • greaterexp, you were diagnosed recently, right? I'm still trying to keep everything together, so I apologize if I'm totally incorrect. I would think you needed some time to accept all of this on your own. I can certainly understand your hesitation to share with others immediately. And your kids? We're used to being the strong ones, letting them unload on us, rather than the other way around.

    My MS was physically obvious years before I received my diagnosis. My boys were 10 and 12 then. There was no question that something was wrong with their mom. But seeing how you don't live near your adult kids, and they don't see you, and perhaps your symptoms are 'invisible,' I can understand them not knowing without you telling them.

    Your daughter will probably need some time to come to terms with this. She loves you and is concerned. Continue to dispel some of the misconceptions out there about MS by letting her share her fears with you, ask questions, and learn more about MS and how it affects you. Boys are different than girls. My boys don't ask much, but from what I understand, daughters are different.

    Keeping you and your family in heart and prayer...

  • Yes, I was diagnosed in September of this year. My youngest son is 21 and soon to graduate from college. He could see I was struggling with something, since he still lives at home, so I had to tell him what we might be looking at. He is taking it well, as is my other son. But I just feel guilt at putting this burden on my daughter on top of everything else she must deal with now. Just after I told her, the transmission went out on her car, so she was figuring out how to deal with that mess, too. She deals with severe IBS and migraines besides. I also worry about her risk of MS, considering the comorbidity with those issues. But I sure can't tell her about that now.

    Thank you so much for the prayers. I know every one of you has had to deal with this, too. It helps to hear your stories and advice.

  • Bless you and your children and family. It's hard to share this kind of news, especially when you are still absorbing it yourself. I think telling them was the right thing to do. You and they all need to let the DX sink in and move forward from there. My husband is my rock and we waited until I felt strong mentally to tell my daughter, the nurse. Knowing she'd have many questions we weren't able to answer. We only waited a few days and she was glad to know and then she told our older grandkids. Those old enough to somewhat understand. My friends have been outstanding, calling, helping, making sure I get a ride to church. MS was not even on the radar when I was DX'd. Keep on coming back here. I believe we can be helpful to you as we all share this disease and can help, Lynn

  • I'm so grateful for your kind words and encouragement. I never pictured myself having to give this kind of news to my kids. I doubt any of us ever have. I know my daughter feels awful that I am so far away because she wants to help on a daily basis. I am grateful that I have a wonderful family here, who are all so supportive and helpful. I hope to visit my kids in Illinois soon so that they can see that I'm doing well right now. I think they picture me already in a wheelchair or completely disabled, though that is not the case at all. I know they feel helpless, just as I feel helpless at times because of the miles between us.

    Thanks to you all who truly understand what a complicated thing it is to deal with at times.

  • Hang in there. Try to remain positive. My kids are spread over the whole USA. I asked them to get my room ready because once I get started on treatments, this Nana is going for visits. Reassuring your kids that you're not giving up would be helpful. Lynn

  • Good evening, there is never a good time to tell anyone bad news of any description and everyone handles it in a different way. My eldest son cannot express how he feels. He has no faith in God now because of my condition. He says ' after all you have done for Him how can you still believe when you have gone through hell and now He lets this happen as well". My daughter who is a nurse is quite hard and she doesn't let her feelings get in the way. My youngest son asks how I am, regularly but I think he is just being polite.

    No one likes to talk about it, if you start a conversation they change the subject. At the end of the day it is you that has ms and they have to deal with it how they can, but sometimes as a mother it is difficult to think that your loved ones are suffering because of something you have been given and it's hard to put yourself first. Hang in there, don't feel guilty, as I have done,God bless, praying for you and yours, Jimeka

  • Thank you, Jimeka. You all can truly understand, so venting feelings here is such a blessing!

    I know that with time, all my family can learn to deal with things. I suppose the hardest is at the beginning when there is so much to digest. It's like being hit with a 2x4 you never saw coming.

    My husband is wonderful, thank God, but I may have softened the blow almost too much. I think he still thinks I'm super woman and will remain that way. He's making plans that don't include MS.

    Ah, well. All in good time.

  • It doesn't matter how wonderful husbands may be, they still need feeding!!! Lol🌈

  • i have heard it said many times, J:

    The way to a man's heart is through...

    his stomach.

    Cheers!

  • Jimeka, I'm sorry your kids find it so difficult to talk about your MS, and that that there is somehow blame put on God. I don't believe God allowed this disease because of anything I did or didn't do. Good things happen to bad people, and bad things happen to good people. I just know that God is with me through this, and he will use it for good somehow. I depend on His sustaining me no matter what goes on in my life. I pray your kids will understand God's amazing love and grace, as you obviously do.

    God bless you!

  • My husband still does the same, greaterexp, and I've had MS for 25yrs. It's a hard balance: doing what you can while you can, but still being firm and saying "No" when you need to. My husband KNOWS I have balance and walking issues. He also knows that when I last sailed with him 2yrs ago, I was in a full-blown relapse and went on a week-long sail against my neuro's instruction. I can't fault my husband. I'm the one who chose to go. I still get on the boat with him, but these days it's to 'camp-out' together. If he sails, I step off and wait until he returns. Even though he knows I can't join him, and won't take the chance of another fall, etc., he still gets that glimmer of hope in his eyes when he asks me if I want to sail around the world with him.

    This is something the two of you will have to come to terms with. And if I'm reading you and what you have said correctly, you will have to set the pace and firmly apply the brakes if your husband is anything like mine.

    You have a lot on your mind as it is now...new diagnosis...you just let your kids know...your concern for them and their dealing with it...

    Try not to take it all on at once.💕

  • What sound advice! Thank you!

  • Tutu, this is exactly what I am talking about when I say that sometimes no matter how much someone loves you they still don't always get it. My hands and legs haven't worked right in 6 yrs and while mostly my husband is understanding, he is also very stoic about his feelings, Therefore, when I get that generalized all-over MS pain and I take medical cannabis for it, he gets upset at me because I can't do certain things. I know that nobody likes to talk about this subject or at least nobody has on this site that I know of, but that includes pressuring me for sex when II am just not up to it. I realize that he has his own issues: he has no use of his left upper extremity from the stroke and now is full of arthritis. He believes in just suffering through the pain and not saying anything, which is very unpleasant because then I think he is angry with me when he is just really crabby from his pain, and it makes me feel even worse when I am having a flare, pain, etc. I don't mean constant complaining but I do think it's important for family members, especially caretaking spouses, to discuss their feelings or how they are feeling with one another so that they both understand.

  • You're right, Sukie427, communication is extremely important. When you've figured out how to get your husband to do that better, let me know how you did it. 😉

    All kidding aside, I do believe that for the most part (there are some exceptions), men tend to be less apt to share their feelings in words than women are. Women are more social, more relational 😃, and we like to talk things out. My husband often gets that deer-in-the-headlight look when I try to explain something in three different ways because I don't think he got it the first time.

    As for sex...hmm...that too needs to be communicated, but probably not in the heat of the moment. I've discussed my physical changes with my husband--the sensory changes, my increased exhaustion, weakness, etc. But I've done so when there are no other distractions, and when we're both in a 'good' mood and less likely to take offense or feel 'under attack' when doing so.

    All that said, I also try to remember that while he does his best to meet and understand my changing needs, I don't want to be totally self-focused and forget that he has needs too, even if I honestly have no physical desire or strength to meet them. I guess that's another way I have to reinvent myself- to determine ways I can remedy that whether it's the time of day when I am less tired, or something else.

    If you haven't already done so, I recommend you share with your husband how he hurt you-physically and emotionally. But do so when the time is right and you can be calm about it. I hope he takes to heart what you have to say and that it was only a misunderstanding or miscommunicstion. Sometimes marriage takes more work when we're dealing with changing health, doesn't it? My best to you and hope for a loving resolution. 💕

  • Greaterexp, my whole family has always thought I was super woman. I'm not sure if MS has become my excuse and allowed me to be human. Sometimes I feel guilty for using it as a crutch but simultaneously it is a relief not to have to be perfect. That internal conflict is something I struggle with each day...

  • Oh, darling, can I relate to that! I felt that guilt yesterday when I was physically feeling pretty well, but I just couldn't seem to get motivated to really accomplish anything. I felt like I should be working at top speed like I used to. Maybe the pressure to perform really came from inside me, and maybe I liked having people think I could do 1000 things every day. This redefining may take me awhile!

    I hope all find the balance (physically, too!), that we hope for.

    You're still working out side of the home, aren't you? I'm agog!

  • Hi, erash. My family thought that I was Superwoman, too. what with working long hours as a lawyer and raising 2 kids. But that was back in the days when all of our mothers stayed at home (the 1950s) and we baby boomers just had to go out and change the world, so we had no role models to emulate as working moms. We weren't super women; we were just women trying to establish a new normal and in exchange we made 59 cents for every dollar a man made doing the same jobL still bore the responsibility of finding childcare or missing work when the kids were sick; getting dinner on the table or else go out; and coming home exhausted at the end of each day wondering if it all was worth it. That's why the MS hit me so hard when I got it late-onset at age 57. I tried to fight that, too, but I was so worn out from it that my fight with MS lasted only 3 years before I realized that I was not doing anyone any good, least of all me. So I finally threw in the towel. Sometimes I miss those heady days, but mostly I don't, and I am not ashamed that MS won that battle. I don't intend to allow it to win the war..

  • Well said Sukie! If I were super woman I would have been born with a cape and tights! 😉

    Problem is, and you alluded to this, I bought into the perfection thing.

    Now I'm m a recovering perfectionist. Hard to let go...but it is freeing! 👍

  • And I, admittedly, deal with the pride issue. Never realized I was prideful until I could no longer perform or accomplish all that I used to. Maybe pride and shame go hand in hand for me. I'm still learning that unconditional love and acceptance starts within. It's been hard going from (a Martha) 'doing' to (a Mary) 'being' and accepting that both are okay.

  • It's funny you brought up Martha! I had just been praying that I could tone down the Martha part of me! I'm certainly having to work that out!

  • Let me know how that goes. I still struggle with it!!

  • We will compare notes sometime!

  • Education, Education, Education!

    Most importantly, and I know you are proactive because you are here.... educate yourself so that you are an information deluge on those around you.

    Your eloquence and knowledge of everything regarding your diagnosis will give them peace. Your plan of action, knowledge, and humility will aide in comforting their worries. After all, much of the anxiety regarding this illness is people's fear of "the unknown".

    It will instill that you are on the right path with your care. The ball is not being dropped and you are on your game. They will feel comfortable, in turn, asking you questions. You can help educate them...

    I cannot fathom having to drop that knowledge on my child (or children!). I have, however, imagined it - my daughter is 6 and I know it won't be long before, "Daddy is old and tired" doesn't cut it anymore. I''m only 33 and I've been giving that excuse for years now!

    And on 2 final notes:

    1. Besides being able to educate your loved ones, it will make you more confident discussing these things. I cannot vouch for others, but I went through many years of shame.

    2. It will make you your own patient advocate. No doctor is perfect. You MUST always be prepared to advocate on your own behalf with your physicians. Information is key.

    Always.

  • Chris, so wise for someone so young. Blessings Jimeka

  • That's in regard to the stomach comment I bet!

    Ha!

  • So true. Educating them, and yet not overwhelming them is tough to balance. It's tricky being realistic about what may happen and preparing as best I can without frightening them. I do think I've been very clear that no one can guess how things will progress, and I'm certainly going to do what I can to slow down the progression. I in no way am throwing in the towel or giving up. I hope they will see that, and that I have much hope for a good future.

  • Very wise counsel, Chris.

  • Greaterexp, it's MSFighter responding back. Boy, there never seems to be a good time to break this kind of News to your family. My immediate family, my sons and my daughter knew that something was terribly wrong with Mom immediately. When MS hit me during the diagnosisable stage it literally knocked me flat on my back. And since Mom normally never stopped, the week I spent on the couch sleeping continually unable to get up without assistance with no use of my right arm and hand pretty much cued my sons and my daughter that something terribly wrong had happened to Mom. So there was no hiding the entire diagnosis process and the diagnosis. My mom was another matter altogether. At age 92 she was starting to fail and her doctor gave her less than a year to live. I knew it would absolutely distraught my mother if she found out I had MS. Only my sister and her oldest daughter knew about my MS because they were helping to research options for me in Cincinnati area. I managed to keep my MS hidden from my mom, but she did comment that I was awful tired a lot and wanted to know what was wrong with me. I simply told her my new job is very stressful and was totally exhausting. I believe she bought it. I hope and pray that my son will never have to deal with MS. I pray to God that a cure is found long before they might have to suffer from it. As far as breaking the news to your children, I don't know if there is a great way to do it. It's tough no matter how you look at it. The only thing I could think to say would be to remind your children how lucky you are to have MS. If you explain to them that you still have a future with Ms, it might not be the one you quite expected but you can live your life as full as you want it to be. And you can also explain to your children that there are many other illnesses out there that are terminal and would take you away from them quickly. Such as one of the couple dozen different types of cancer that are prevalent today. Once you get them thinking along those lines hopefully they'll understand that they can be there for you and help you live a long life. If your kids continues to be upset with you about your delay in letting them know, just explain what a long drawn-out process it is to diagnose MS. And you simply were waiting for all test results to come in and doctor visits to make sure that you had a MS before you let them know.

    Greaterexp, please let us know if any of our numerous suggestions helped you. Remember together we are stronger! You've become a part of our family and we value your participation in our chat room. Take care of yourself and please, please keep in touch!

  • MSFighter, you're right. I did start by telling her that I needed to tell her something, and that I wished I didn't have to tell her because I hated to burden her. I said right away that I didn't have cancer, and that it was "only" MS. I told her people don't really die from MS; they die with MS. I could still grow old without a great deal of disability. I begged her not to go crazy looking at the internet because my course may be completely different from anyone else's.

    I think it hit her so hard because she's already having such a tough time with her husband being gone for a year. We're very close, but live so far from another. Neither of us can afford to travel to see each other more than once every couple of years, and I know she wants to spend as much time with me as possible while I'm probably at my best. She wants her children to spend lots of time with me so they remember me. She wants to help, and it hurts that she can't.

    I know many of you have faced something very similar. I'm so grateful for the understanding and prayers on our behalf.

    What a precious gift you've become to me!

  • My ex contacted me after 20 yrs (he lives in UK by the way) because he heard I was sick...he seemed disappointed when he heard it was "only" MS. I think he thought it was cancer. Education is needed!

  • Perhaps it is best that your ex is your ex!

  • Agree!

  • Geez, Erash, he seems to make a better "ex" than a husband! I guess Ii am very lucky!

  • My (current) spouse is wonderfully caring and supportive. Guess I made a good choice leaving the ex 👍

  • Greaterexp, it's MSFighter again. I think your daughter could benefit a lot by becoming a member of this chat room and asking questions and learn more about MS. As a secondary caregiver it is very important for her to understand what you're going through and what to expect.

    I believe wholeheartedly that it would help her too stomp down some of her worst fears about you having MS. Another thought would be to invite her along to your neurologist visits to hear everything he explains to you. I believe that would be extremely beneficial as well. As I have always said knowledge is our friend. Your daughter is in need of all the knowledge she can get her hands on at this point. She also needs to be included in your treatments, and the new path in life that MS has made you take.

    Let me know if any of this helps.

  • I appreciate your thoughts, MSFighter. She would want to be with me to be included and to help during relapses, but she lives 2000 miles away. I think that is one of the things that bother her the most. I've promised that I will always update her and explain things as we go, and never leave her in the dark.

    I'll be honest with you all that, for now at least, I can talk with you all here and vent freely. I don't have to worry about giving more information than she can handle at any time. Perhaps later when she has had time to adjust to my diagnosis, it would help. Unfortunately, she is looking online and reading about worst possible outcomes. When she has time to get through a little of that, I may invite her to join this or another support group. For I now I feel like I need a place to vent freely without frightening or overwhelming her. This place has been a godsend for me!

    Thank you all. Really.

  • I had the unfortunate situation where I needed open heart surgery immediately and diagnosed with MS one week apart. My kids ( 19 -29) were overwhelmed and said we were not being honest with them. They were hurt which means they love me. I had to explain that MS is not a death sentence but it is a new reality. They have since gone to helping me with little things like getting out of chairs moving things out of my way etc.

    I tell my four kids I can't do things like walk on a glacier in Alaska like I did five years ago, but I can get joy out of watching them do things I can't. Just spending time with them is my reward.

    Good luck with your journey. It is not easy but we have to keep going and make the best of it. RobertCalifornia

  • Well said!

  • Hi., greaterexp. I, too, was diagnosed late, and when the dx was definitive I did call my adult children to let them know. I explained what it was, what it wasn't, how it could be treated, and that although it is a terminal disease, that I planned to outlive it. They took it well, and because they are men, they don't seem to worry about it at all. In fact, if I am having a "down day" I get angry at them for not calling to see how I am, which they never do simply for that purpose. However, we are going on Tuesday back east to spend Thanksgiving with them and their families, and my eldest son called to invite us to join them on Friday night for a walking tour of a holiday light display, and asked if I needed a wheelchair. When I said that I probably did, he called right away to rent one and called me back to tell me that. So they do come through even when you don't expect it!

  • Guys and gals do deal with things differently! I'm so glad that your sons are taking care of you while you visit. They are being very thoughtful, and that isn't always second nature!

  • For me, my immediate family was relieved that I had a diagnosis. I had been dealing with the symptoms for about 5 years. The rest of the family doesn't act any different, because it actually runs on my maternal grandmother's side of the family, with at least 2 diagnosis in each generation since the 80's. For those that have had a hard time with my bad days, I allow them the room to cry and ask questions

  • I've always been so independent that my family seems mostly unconcerned. I guess they have a lot of confidence in my ability to carry on. I'm the person in the family who has taken care of everyone else in their hour of need. I guess there's one extreme and then there's another. Sad but true.

  • I hope that you find plenty of help and support when you need it.

  • Thank you very much. Me too! It's one reason this site is a god-send. There's nothing like people who understand, not in theory, but because you are also walking in it.

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