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What no one will tell you about telling people you have MS

Search "MS and friends and family" and you'll come up with about 1,000 websites about telling your friends and family and how they just want to support you.

I call bullshit.

Some of us live in the real world.  

"Your friends care and want to know!". Really? We're in our 20s and 30s people. We're not 60 year olds sitting in a back pew talking about who's sick these days.  I told a "good friend". Turned out she really just needed me for her Friday night wingwoman, and MS was more than she could handle. Sure you could say "you're better off without her!" But those Friday nights were fun and now that I've been labeled as "not fun" I'm not invited much anymore even though I'm perfectly able to go out and could use the tequila and stress release.  So I regret telling her.

"Your family wants to support you"! That's not true for everyone and the assumption that everyone has loving parents who want nothing but to care for their kids just makes us feel even more broken and lonely.  Some parents are selfish. Some parents just want you to take care of them, and you put up with a toxic relationship because they're parents.  

"People will understand!". Really? You want to tell that to my friend whose landlord increased her rent by $200 a month the day after she disclosed because she was going through diagnosis and in the hospital and late for the first time EVER. Did he understand or did he just sense weakness and swooped in to take advantage? Be smart, people. 

I'm here to tell you that we live in the real world where not everything is as the books say.  Do you want to be surrounded by only "True friends" that can have deep, meaningful conversation such that you're ok with anyone else disappearing because illness is just awkward and no fun? By all means disclose.

Do you have dysfunctional self-centered relatives who have no use for you once you don't have the energy to help them as much and want to see them disappear?  Or worse, stick around but cause you more stress than you could ever imagine, making you sicker and sicker? Then by all means disclose.

Will it not bother you if you tell friends or family and they act shocked and upset only to never mention it again and pretend you no longer exist? If that's what wish then by all means disclose!

But if any of the above gives you pause then go ahead and pause. F*ck the books and the articles and the advice from the MS society and the *professionals*. Trust your gut now more than ever. If your gut says not to tell, it's right! And don't let anyone shame you into feeling guilty about that decision.  Not all of us live in storybook worlds where everyone is a good person and families are perfect and fully supportive and it sucks that none of the stupid websites even acknowledge that.  Why? I have no clue.
Not a good person.
(thanks, South Park!)

So here is what I can tell you: sometimes not telling is the healthiest thing you can do. Think I'm making it up? After you read the 1,000 guilt-inducing articles about how it's "healthy" to tell, go read the OH SO MANY POSTS on ms message boards about people who say they told several people upon diagnosis and really regret it. The regret is real, people. 

This disease sucks and takes away more control than any of us want. You get to decide how you want to live with it, don't let anyone make you feel like you're "doing MS wrong".  The only thing that's "wrong" about this motherf*cking disease is the sh*t circumstance that you got it. And that's not your fault. So if you want to tell the world, tell em.  And if you want to tell no one, tell no one. And if you want to drink tequila on Fridays, do it.  Just think a bit before you do it, don't just do it because *they* say to do it. Who are *they* anyway? And why do you think they know your situation better than you do just because you have this awful diagnosis now? Here's the secret: they don't! 

There is no "wrong" way to "do MS", or any horrible and incurable illness for that matter.  Whatever want you WANT to handle it, that IS the right way for you. And if anyone so much as tries to make you feel a tiny bit bad about that feel free to send them this and they can read an anonymous person with ms telling them to f*ck off. 


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