Making Decisions

I decided to go with Gilenya.  I called my doctor to let them know so they might get the paperwork going; we set an appointment two weeks out - for this drug, I have to go in for an entire day to be monitored because of the potential heart issues.  It's the day after my birthday, FAN-TAS-TIC.

Right now, I'm struggling with the decision of telling people about my diagnosis.  You know how the internet is, well, a semblance of anonymity?  I have always been a very active person with social media, and I probably have way too many accounts to keep track of.  So there is something different about sharing this sort of thing online, on my tumblr and this blog, even on my art page and twitter.  I know about three "real" people from my life on those sites, and as may be clear by it's slight ridiculousness, I don't use my real name.

In real life, however, having a chronic illness can be very different and difficult to share.  You are not always greeted with sympathy or care; the attention one receives from this kind of revelation can often be negative, or a negative-kind-of-positive attention, I'll shorten it to 'NKOPA'.  What is NKOPA?  The kind of response that is overly sympathetic, like pity, or even the kind that is immediately drenched in suggestions.  As I stated in my first post, this is often declared in the form of what food one should/should not eat, or what deodorant one should/should not use.  My mother was quick to share it with extended family after I told her (which I did not ask for) and I then got a flood of emails about how I should 'cleanse my body of toxins' and things of the like.

The problem with these suggestions is that people are inadvertently telling you that you can prevent your problem, which in turn, means you could have prevented it from happening at all.  If I could have kept my legs from going numb by eating more grapes, I would have.  I would have drowned myself in grapes (and I don't even drink, haha!)  But that is not reality.  Science shows that many of these theories are invalid and anecdotal - which basically means that because everyone has a different 'flavor' of MS, you can't predict when relapses will occur whether or not someone has a particular diet or habit.

By the way, do you want to know how to tell if someone is Vegan?  Don't worry.  They'll tell you.

So today I am asking for some responses.  Did you tell people in your immediate circles when you got your diagnosis?  Did you tell anyone at all?  How did the people in your life respond?  I have basically only openly told the people I work with as it has seriously messed up my work schedule (see how now I have another MRI and a full day at the doctor's office ahead).  I would love to hear some real-life experiences of what you went through when you were first diagnosed.

Thanks all,  Margo