Hi there, I was diagnosed with MS only 5 days ago but I still feel a little in limbo as the nurse hasn’t contacted me yet so all my questions are still in my head!
All I know is that my MS is in the early stages and I do feel lucky to have received a diagnosis so soon.
I know I’m overthinking everything right now but one issue I’m having difficulty with is when/how to tell my youngest child about this. She is nearly 14yrs but a typical teenager with her strops and laziness! … I don’t want her to worry or potentially go off the rails. I don’t have a partner but I do have an adult child who still lives at home so I have immediate support.
Is there anyone on here who’s had similar worries to me?
Thanks
(you can tell me to get a grip if you want to! I won’t be offended )
I totally get it!
I was diagnosed over the summer. My symptoms are okay. Annoying, sometimes painful and uncomfortable but not a major issue as yet.
I’ve decided not to tell my parents as I don’t want them to worry. My sister died 6 months ago and I know they’re not in a place to handle it.
I had 7 years between CIS and relapse so I’m crossing all my fingers for a good gap again.
I have spoken to a few close friends and my partner as well as my boss. Fortunately my kids are under five so not aware of anything yet. I guess I’ll cross that bridge when I have to.
Unless your symptoms are obvious, others won’t have noticed much of a change, if any, as yet. 5 days in, no way will have you fully assimilated the consequences and if you’re yet to meet the MS nurses - or even the MS Specialist - you don’t have the full story yet anyway. Take some weeks & months to research it thoroughly and put an objective assessment of your health into context.
I was misdiagnosed for nearly a decade and my progressive symptoms were quite advanced, such that they could not be ignored, but I knew what it actually was I still only told my partner and left it for many months before telling others. I have a 17 year old lad and like you, wanted to protect him. When I did tell him (and the others), he was fine.
The most important message for them to hear is “I’m still me”.
Depending on the severity and rate of progress of your condition, you may choose to avoid telling those closest to you for years. Kids are incredible - particularly teenagers - and they also don’t spot what’s going on right under their nose! After my partner, I found it easiest to tell remote friends, those who I only saw very occasionally. It satisfies the “confessional” element and need to share out of the way.
My advice would be take breath, wait for MS Nurse contact (7days + chase them up), get to know what the diagnosis means to you, discuss with your significant other when this is all done and good luck however you decide to take it.
My kids were teenagers when I went through an incredibly bad spell, so they were painfully aware that something was wrong. I sat them down with a family friend who’d been helping us out and told them that the doctors were considering MS and what I knew about it. My oldest struggled not to cry but was fine when he learned it wasn’t terminal. My youngest asked about treatment options. And then life went on.
It was actually many years later when I got the actual diagnosis. Mum and both kids went off to cry alone for a few minutes, but then they were fine. We were all just happy to finally know for sure what was going on.
You know your kids best. Will it upset them more to learn about it outright or to wait until you start having visible symptoms and they become afraid that it’s something more serious?
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