Communicating with family members
I want your opinions and your experiences on communicating with family members. To preface this, I am still going through the evaluation process and fighting for testing with a lackluster neurologist, so I don't have a diagnosis yet. I have been avoiding speaking to my younger sister and my mother since the symptoms got bad, but my sister's birthday is next week and I need to call her. What experiences have you had, and do you have any advice? I still don't know if I'll even mention it yet, but I'm wavering. We're close as family, but 2000 miles apart.
I'll take the good, the bad, and the ugly if you are willing to share!
Much love and respect!
Hi,
!
First off, I hope your evalution goes smoothly and that you can get that testing done, lackluster doctor not withstanding.
Secondly, you know your family best and you will know the best way to communicate with your family. Are they likely to overreact? Jump in with offers to help and do their own research? Act like your diagnosis is no big deal? I only ask because MS can seem like a pretty scary diagnosis.
I would personally wait until I had my results in hand before telling my family, but that's how I roll. And I don't think my approach is the right answer for every family. So, it comes down to what you think YOU and your sister and mom would prefer Would they like to be "in the know" from the beginning, even while you are still going throught the testing process? Or would they be more helpful once you know what you're dealing with? Do you think your sister and mom wonder why you have been avoiding talking to them and maybe discussing what could be wrong with each other (this is totally how my mom and sisters would act if I avoided speaking to them for any length of time 😉 )?
I wanted to share a couple of posts from community members on this topic that may give you some ideas on how to proceed. Here's one -- https://multiplesclerosis.net/stories/support-needed. And here's one with tips for family and friends of a loved one with MS -- https://multiplesclerosis.net/living-with-ms/advice-for-family-and-friends. It's not quite what I think you're looking for, but I like the topics it covers.
Again, you know your mom and sister. My mom would want ALLLLLLLL the details and would pepper me with questions. One of my sisters would just listen quietly and contact me later with great questions and insights (she's a nurse). And one sister would probably pretend nothing had changed and ignore the news. And you will probably have a good guess about how your family will respond, so I would use the knowledge you have about them to guide your decision.
And lastly, if YOU need the support as you go through this, then, heck, you tell them whenever and however you need to. You should not face this process alone.
And, while it's not the same as family support, we're here for you as you go through this and you are welcome to come here anytime you need some support or understanding.
I hope this helps and apologies for the novel!
Best, Erin, MultipleSclerosis.net Team Member.I wish there was a love it reaction, your response is amazing! I've been really going back and forth with this. My Mom has been on disability for the last 20 years and she has memory problems (and a drinking problem) and asks me the same questions and tells me the same stories multiple times in a single conversation.
My sister is wonderful, but will ask a million questions and she's very interrupty. I would love to have her in the circle, but I'm afraid it will be exhausting.
I have always been the caretaker and the person with all the answers in my family. My sister comes to me for everything. And I just... I just don't know if I have the bandwidth. With all of our conversations being over the phone right now, it's daunting, especially with my diagnosis still up in the air.to add on... my mind is in turmoil, I've never had such disorganized thoughts in my life. Communication has always been my best strength and to suddenly lose it is a tremendous loss.
I married the love of my life after 10 years of partnership, 1 month before the bottom fell out. I hid a lot for the first couple of months because he's a fixer. But I was finally able to find the words to tell him what I needed. So I do have an amazing person that I can turn to and just say that I'm struggling. Or that this moment stinks.
I basically raised my sister, taught her how to drive, helped her get her diploma, helped her find her independence, and now... I don't know what to say to her because she looks to me when she has questions or moments of turmoil.
And I lost my train of thought, I may follow up again.
Again, my love and respect to everyone on this path or supporting someone else who is! 💜
Ah, I think I see now,
. You're the family foundation in a way, aren't you? The rock. The lighthouse. The reliable one. The steady one.
Again, you need to do what is right for you, but based on what you wrote, telling your mom and sister may actually add more weight to the heavy load you are carrying. And that is no shade on your mom and sister in any way.
If your partner is your rock, then keep leaning on him. He sounds like good people to me 😀
But again, you know your family best. Sometimes, other community members have had to build a support system outside their families of origin, for a variety of reasons. Your family may mean well and love you deeply, but they may not be equipped to offer you real support and that's for you to decide.
Good luck. I know this isn't easy in any way.
Best, Erin, MultipleSclerosis.net Team Member.so I ended up saying nothing. It's her birthday, and I can't make it about me. I'll wait until after my coming appointments (and hopefully some tests and answers) before I bring it up. It's easier to say nothing and have nothing to explain at this moment in time.
Heartbreaking and very isolating, but I don't regret today's decision. 💜, for what it's worth, I think you made the right call. I am so sorry it's isolating for you. I know it's not the same, but we're here for you and we're happy to offer support, even if it's online.
Gentle Hugs, Erin, Team Member.
thank you so much. I have always been the rock. The lighthouse in the storm. The decision maker, the person who makes the rational decisions, the person everyone looks to for answers. I analyze every situation and calculate every possible outcome and I rocked it.
And now, my thoughts are disorganized. It's a very different and difficult view of the world. I've never had trouble in this fashion before.
I've always said I was a child borne out of crisis, my childhood was wraught with emotional turmoil and physical abuse, and we managed to overcome and forgive.
And now, I find myself in a position I've never been in. I've never asked my family for anything. I learned at a very young age that it was not acceptable... they don't have the bandwidth. It's taken me 39 years of my life to finally find the strength to say that I can't do it alone.
My Mom and I have mended our relationship, without me putting any blame or weight on her, she did her best. My sister and I have always been tight, but there's a clear declination of how things flow. My younger brother and I barely speak, I'm still mad at him and trying to forgive his selfishness (and maybe monetary debt) but we're working on it. It's so hard to find a safe space to say that I need their help now, when they've all relied on me to take care of everything important through the years.
I am so grateful to have found this community, and so very grateful to know that I have people caring about my outcome. Thank you for all the light you shine into the world! 💜
