Thursday, October 3, 2013

Do you live a double life?


It’s hard living with a diagnosis of Multiple Sclerosis and even harder deciphering when to “come out” - who to tell, how and when. For me, telling my loved ones is easy and I’m very fortunate as I’ve read stories about how many MSers struggle with this, not getting the right level of emotional and physical support from friends and family. I feel lucky.

At work, however, I do not talk about my life with MS. So I’ve chosen to live a double life. By day, I work in an office (think Dilbert) amongst colleagues who do not know about my health status. By night, I live with MS amongst those who love and support me. 

It is exhausting being a secret agent. Hiding out in empty cubicles to make phone calls to my neurologist and discreetly leaving early for infusion, MRI and doctor appointments can be super difficult to cover up but I have chosen to hide my mission: do not reveal the MS diagnosis at work.

Read more about how challenging it can be to ensure my cover isn’t blown on Multiple Sclerosis.net. How has coming out with your diagnosis been with your friends and family? Work? Or, do you live a double life like I do?

Best always

Agent C.

8 comments:

  1. Corinna MattelianoOctober 3, 2013 at 7:25 AM

    I actually found it's a lot easier to be extremely transparent about my condition...when things go wonky it's better to just say MS thing rather than having to go through a long list of reasons why. Transparency allows me to continue on and live my life how I want to. As I am sure you understand, one of the worst things about MS is the fact that you can't control how you function day in and day out, letting people know they can still treat me as they always did and having people find out about my diagnosis my way is one of the things I can control so I will take advantage to the fullest extent.

    Corinna, 5 years and counting

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    1. Hey Corinna. Thanks so much for stopping by. I so admire your courage to be completely transparent with your diagnosis at work. A part of me wants to shout it from the roof tops and the other part of me wants to keep it on the DL. It's a challenge for sure. Thanks for your note, really really appreciate it. Best, Christie

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  2. I can no longer work due to MS, so I don't have to worry about that. I found it hardest to come out to my friends. I lost a couple after telling them.

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    1. Hey Karen - great to hear from you. So sorry to hear that you lost some friends when you came out to them about your diagnosis. Hopefully you've healed some from that hurt. In the meanwhile, keep snapping photos and hope you are well. Christie

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  3. I understand the reasons why not to...however, when your brain refuses to allow you the luxury of not saying anything...how do you stop yourself from saying something stupid? Your co-workers know somethings up. Mine do. I haven't put a label on it; but these ladies are plenty savvy. Even my regular customers know somethings up. They've seen me flounder for their names; seen me throw my hand out to keep from tettering; heard me make "mish-mosh" comments or utter made-up words...and this LAST week my co-workers saw me choke on things. How do you disguise that?

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    1. I agree it's difficult to disguise what you describe and can't imagine how it must feel. Frustration comes to mind first but I know it's much more than that. When these types of things happen to me, I just cover it up with a laugh or a giggle, as if to say "I meant to do that". But, this is not always possible or comfortable to do. Hang in there and I hope you find that the "mish-mosh" subsides a bit. Thinking of you. Best, Christie

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  4. I've been suffering on and off with symptoms for 6 years but this last year I've had loads of cognition issues present themselves too. My colleagues took the good humoured approach to me losing words, muddling up two words to make a new much more fun sounding word and forgetting everything. Even the 60 children in our setting who are only 4 jump in with the word I'm looking for if I pause for more than a second. I only got my dx 2 days ago but I was open and honest with colleagues through the limbo land days. My boss has been great and has offered to make any changes I need in the future. Obviously I am only just getting used to the new me but I think that not having to worry about making a fool of myself in front of people who don't know my dx is best for my mental state. Plus my memory is so poor I'd forget what I told people if I had to lie about appointments :)

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    1. Hey Elle. So glad you have an understanding boss who is offering to help. That's awesome. I think you're right, absolutely right, in being open about your Dx. Much easier in the long run as it gets complicated living a double life. Best, Christie

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