my so-called double life

by tinglyfeeling on March 23, 2010

mustachecropAs I’ve mentioned before, this blog is anonymous. I keep it that way so if someone Googles for my name (hey, it could happen), they aren’t confronted with THE TRUTH ABOUT ME. I worry what they’ll think, how they might react, whether they’ll still be able to think of me as who I am and not what I have.

(I’m sure someone could figure out the true identity of Tingly Feeling if they really wanted to, but I’d hope people have better things to do with their time.)

My close friends and some trusted co-workers know about my multiple sclerosis (those words are still so hard to spell out!), but I conceal it from more casual acquaintances and colleagues. It’s a tricky balancing act, keeping my MS a secret from some people while disclosing to others. It’s getting harder and harder to keep the two sides of my life separated, especially with my participation as a team captain in the upcoming MS Walk.

So I just got off the phone with my mom, who doesn’t really understand how I feel about all this. (She’s the person who’d told our whole family about my MS not even 24 hours after my diagnosis, after all.) I sensed a judgmental tone in her voice when she asked if a guy I’ve recently started seeing would be participating in the MS Walk with me and my team in April. He does not know I have MS. He knows about the Walk, but will be out of town, I told her. And then I told her that when I’d explained to him why I was leading a team for the Walk for the second consecutive year, I gave my sister’s MS as the reason.

“That’s beating around the bush,” said my¬† mom.

True. I’ll give her that. But I’m not ready to have that conversation with him yet. Everything is too new and good. Why complicate things by telling him, “Oh, by the way, while you’re deciding whether you like me enough to keep me around as a girlfriend, let me tell you about my chronic and potentially debilitating disease.”?

Mmm. That’s some good pillow talk, right there. For now, I want him to like me–or not like me–for me, and not base his decision on this total buzz-kill of a revelation.

But I’m not naive. I know I can’t put this conversation off forever and that anyone I date for a significant amount of time deserves to know about my MS. I’m just not there yet. And I’m still figuring out the duration of that “significant” time period. I have no idea how this works–it’s my first time dealing with this. I’ll be honest with him when the time is right, I guess, and hopefully he’ll understand why I felt I couldn’t tell him immediately. And hopefully he’ll stick around.

It’s only been two years since my diagnosis and I know I can’t keep up this facade forever–it’s bound to crumble eventually. Leading a double life is complicated and exhausting and I don’t like being dishonest with people I care about. But for now, I hope that my friends and family can respect my choice to protect myself from scrutiny and rejection.

Dating is hard enough as it is.

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  • nikoel

    Love the moustachecrop.

    I think you'll figure out when the time is right to tell him. There will be a moment or an event and it'll be right and hopefully, if he really likes you, he'll be receptive.

  • http://www.tinglyfeeling.com tinglyfeeling

    heh. i'm in disguise!

    anyway, i'll either figure out how and when to tell him, or it will come to a point where i have no choice but to spill it. i hope it's the former situation, rather than the latter. it'll be awkward, either way.

    it doesn't help matters that my symptoms have been acting up lately–slower right leg, mucho fatigue–and i can't/won't talk about it with him. ech.

  • nikoel

    I totally understand. You are more than just your MS.

  • http://www.tinglyfeeling.com tinglyfeeling

    Thank you. My mom doesn't get that distinction. She tried saying that MS is a part of who I am, to which I responded: BULLSHIT. It is something I have, yes, but it is not ME. Eff that.

    She also said she thought the dude should know about my MS so he has all the information and can choose whether he wants to keep seeing me–again, I said, BULLSHIT. My MS–at least at this stage–shouldn't be a factor in whether or not someone wants to date me, unless they're going to be a jerk about it.

    Dude. Parents just don't understand.

  • nikoel

    Again, this is from the woman who told the whole fam damily before even thinking to find out your thoughts on the matter.

  • http://www.ubervu.com/conversations/www.tinglyfeeling.com/tmi/my-so-called-double-life/ uberVU – social comments

    Social comments and analytics for this post…

    This post was mentioned on Twitter by tinglyfeeling: how/when/why do you tell people about your #MultScler? especially when dating? my blog post on that dilemma: http://bit.ly/adeOz4 #MSucks…

  • http://www.tinglyfeeling.com/ms-drugs/drug-vacation/ drug vacation

    [...] During the last three weeks, I realized that the one thing that really ties me to this life of MS, other than my symptoms, which I can always feel, but no one can really see, is my weekly dose of Avonex. I know it’s just once a week, and that’s much easier than a daily dose of Copaxone or 3x-a-week Rebif, but coordinating my non-MS schedule with my Avonex schedule can still be tricky. Especially if there’s someone I don’t want to know about this part of my life yet. [...]

  • http://profiles.google.com/meow.soubie Alexa Joy

    Hi there, Tingly! :) I hope you are doing well! (Well, as well as you possibly can be, given the circumstances. Damn MS, what a tenacious pain in the ass it is!) I find it extremely interesting how differently people with chronic illness feel about telling others. I don’t think there is a right or wrong approach to telling others. Some people benefit by keeping it on the down-low, and others benefit with an openness! I have MS and lupus, and I suppose I fall into the camp of people who tells everyone right off the bat. I can totally understand where you are coming from, though, and your apprehension to tell others – I often wonder if I’m being TMI, or will be interpreted as sitting on the pity pot, or will scare that person away. But I simply just decided not to care! I felt that when I let people know of my disability right off the bat, they were more likely to accomodate me when I needed help, or understand when I was having a bad day – and I needed that, despite how TMI my health confessional might be. And to date, I’ve never had a bad reaction! :) I do feel as if MS and lupus are a part of me, although it’s not ALL of me – and friends and romantic interests have to accept that, if not they will get a quick and unpleasant kick out the door from me (feeling in my legs permitting)!

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