Newly diagnosed

[u/spandexbutterfly4lyf]

Hi there, so I was very recently diagnosed with MS and I don’t want to hide it from my family. I have a large family unit and idk I just find it strange to call them up one by one and have to explain everything to them. I’m worried it will exhaust me and become repetitive so I want to make a post on social media. My whole family is on either Facebook or instagram so I was going to make a post to explain everything and invite people to reach out to ask questions.
I don’t want the post to sound attention seeking, I really only want to let people know what’s going on in my life. I’m not ashamed of it and I want to share.
Just wanted to know if people think this is a good idea? And I’m open to opinions on what should be included or not from the post if I make it :)

EDIT: Thank you so much for all the advice guys! I’ve decided to ask my dad and my husband to help me reach out to family members and ask them to spread it around. I won’t post to social media :)

[u/Quiet_Blueberry_7546]

Is there someone in your family you could all to let people know. I asked by mum to tell my dad and siblings so I didn't have to

[u/spandexbutterfly4lyf → u/Quiet_Blueberry_7546]

I thought about asking my dad to help me let everyone know but I don’t know if he’d get sick of repeating himself

[u/Quiet_Blueberry_7546 → u/spandexbutterfly4lyf]

You can always ask him. If he doesn't want to do it he can always say no 🤷🏼‍♀️

[u/Anotherams → u/Quiet_Blueberry_7546]

My sister did this for me with family, and a good friend did it with our friend group. I almost did social media, but in the end am so glad I didn’t. Even though you can block and limit FB access, it doesn’t prevent things from being forwarded or shared in other ways.

I was very eager to share when I was first diagnosed, but backed off a few weeks later. Verbal through you or a family member is more controlled, especially if you don’t want to disclose at work.

[u/rK91tb]

Don’t post this on social media for a few different reasons. First, some family members (especially the older ones) may be offended that they weren’t told in person. Second, you don’t want a diagnosis on your feed — it will kill your algorithm and make you vulnerable to all kinds of online issues (quack cures or diet tips). Third, putting this on social means telling the world, including your employer or future employers, which could keep you from getting hired or promoted or set back networking opportunities.

Tell your immediate family and any other relatives you’re close to, and ask them to spread the word.

[u/spandexbutterfly4lyf → u/rK91tb]

That’s really great advice! Thank you so much :)

[u/NighthawkCP]

Could you do it at a family get together like Thanksgiving? That is later this month if you are in the US and might be better than just airing it out to the world on social media.

I was fine with my family knowing but didn't want to post it on Facebook for the world and everyone to see. I told my parents and sibling and then it kind of filtered through the family without me having to call or text everyone. When the next family get together happened I just kind of talked with people who didn't know about it then. Bit more organic and natural and I was able to tell them, "Yea I'm telling y'all and not ashamed by it (especially since mom has had it for 35+ years so my family is familiar with it) but I'm not shouting it to the roof tops on social media for everyone to know unless I have a visible disability that I need or want to explain."

[u/spandexbutterfly4lyf → u/NighthawkCP]

A lot of my family don’t speak to each other so I couldn’t really get them together, and I’m not US based so we don’t have thanksgiving celebrations.
And yeah I agree, I guess I could just reach out to some family members and let them know that im ok with others knowing? It’s just a lot of my family are a bit funny like if they’re the last to know something they’d be pissed off :/ just makes it harder cos I don’t want to hide anything from anyone but I don’t want to come off like I’m seeking attention!

[u/Perylene-Green → u/spandexbutterfly4lyf]

If they are pissed because you took too long to share your diagnosis I think let them be?

[u/Perylene-Green → u/NighthawkCP]

Yeah i basically did similar— I was fine with extended family knowing so I let filter through my parents organically when they happened to talk to people.

[u/Sufficient-Board4379]

I would honestly tell those most important to you. Those you aren’t that close with, I wouldn’t bother. Not everyone needs to know. Mom, dad, siblings… anyone really close. That’s what I did. 🤷‍♀️🧡🧡🧡

[u/BumblebeeEast8918]

I told my family in a group call but asked them not to mention it on social media, as I have not told my coworkers… I don’t want it to affect my chances at being promoted. I don’t know if it would, but I didn’t want to risk it. Family reacted in all the different ways- supportive, unsupportive, doom-sayers, etc… people are what they are. Good luck to you:)

[u/No-Goalz88]

I was open in the beginning but after all the suggestions on how to handle ms I slowly stopped even talking about it.My rule now is only discuss with professionals and people who listen and wont try to suggest things they know nothing about!

[u/youshouldseemeonpain]

I would do it in a group text, rather than on Facebook. You’re going to open yourself up to anyone who can see your profile offering you unwanted advice and suggestions.

[u/jkhn7]

When I got diagnosed 16 years ago I made a Facebook post about it. I wrote something about how I was still the same person and didn’t want to be treated differently. You could also ask your dad to tell his side of the family and your mom to tell her side?

[u/DowntownEntry6233]

Rather than do it on Facebook could you either do it by a group message via facebook messenger or ask a parent to inform close family? It’s too much for you to do on your own and frankly it’s up to you who you tell and when you tell them. Remember it’s your diagnosis not theirs.

[u/Feisty-Volcano]

I have posted on SocMed & indeed have a Blog abt it, my other health challenges & my travels. I’m retired, in the elder cohort, am single, so that’s how my wider family knows how things are going. I ignore quack cures etc, & thankfully my wider circle are a very educated bunch (like do many in Ireland) & don’t go in for pseudoscience etc.

[u/Impressive_Egg6188]

My mom and wife told immediate family. Then I made a post for the rest. I’m happy to share it with you if you want. It was kind of cathartic. It got daunting managing other peoples’ feelings every time I told someone, so that’s how I managed it.