ChatMS, 3/14/2016

Alright, peeps!  Time for another installment of post-hours ChatMS!

I missed the chat again - had to do laundry and my poor kitty is sick, not to mention dinner.  Spending a lot of "spoons" tonight.  Looks like this was a good one!  Don't forget to copy/paste the questions to your own blog!

Q1: Has your social life changed since being diagnosed? If so, in what ways?

Yes and no - there are some things that have been altered simply because I can't be as active as I would like to be.  However, I wouldn't say this has been true since I've 'been diagnosed,' so much as since I became symptomatic.  I have been reducing my overall activity and watching what I put into my body since early 2010, always wary of nausea and getting 'the shakes.'

Q2: Who do you tell you have MS? Close friends/family? Anyone and everyone?  

I didn't tell many people for two years.  I have recently 'come out' on my facebook page, but to be honest with you I don't think most of my friends really understand why I have been very vocal about MS awareness this month.  They don't understand it and they never will.  The first person I told I was concerned I had MS was my husband, about four months before I was diagnosed, and then I shared my concerns with one of my oldest friends two days before diagnosis.  Mixed reactions from everyone I told.  I now only share it with patients when they really need to not feel alone in their own invisible struggles - we're kind of a 'special club' that, from the outside, seems very exclusive.

Q3: How long after meeting someone do you tell them you have MS?

As a general rule, I don't tell people right away.  This is because of the negative stuff associated with telling anyone that you are chronically ill - they assume you're telling them to get attention, not to get them to better understand why you do things a certain way.  It's just not worth the hassle.  I suffered from "pregnancy brain" very early on in my pregnancy....but it wasn't pregnancy brain at all.  It was MS brain.  And it's not worth the fight to get people to actually care why you might be struggling.
I waited at least three months to tell my current coworkers.  I don't wait at church.  To me, church is off the table.  If you are going to judge me at church, you shouldn't be at church!

Q4: How do you tell people? When the time is right? Or it just comes out in conversation?

I do both - when the time is 'right,' and when it makes sense in the context of the conversation.  I don't just blab about it.  Again, seems like an attention getting thing - and you get negative attention for something like this, no positive.  People pity you, they don't want to understand you.  As I have said time and time again, it makes them uncomfortable, so it's not worth the hassle.  I have told patients who also have MS, patients who have Fibro, Lyme, or Lupus, and anyone who has 'invisible symptoms' and are struggling - I have another patient who I really have gotten close with, he has muscular dystrophy. 

Q5: Are there times you're ever hesitant to tell people you have MS?

Abso-freaking-lutely.  In a professional context, this is a HUGE no-no.  I don't want my colleagues in audiology to know about my MS because it can seriously impact my employability.  I'm an ADA risk.  Is it incredibly illegal, unfair, and terrible that I would worry about such a thing?  Yes.  But I still have seen discrimination - when I was first diagnosed, I was honest with a potential employer about my very real, very current struggle, because I had been advised not to fly.  They took my interview and I heard not another word.  It was very painful, but I learned a very hard and valuable lesson.  Hence why I waited 3 months to tell current coworkers - and I still don't think I'm safe here, because I know someone was let go for having Parkinson's just before I was hired.

It's shitty, and I hope this changes.

Q6: Did you meet your significant other before or after being diagnosed?

Long before.  We had just gotten married when I started having symptoms - it was the hardest year of our relationship, for a number of reasons.  My emotional state really set things off, I think; I was struggling with losing a very important friendship, with applying to graduate school, with my family being disappointed in my life choices.  It was a hard year.  And then... I got sick.

He's been fantastic, though when I first told him what I thought was going on, a few months prior to Dx, he was skeptical.  When it really got serious, he was convinced I had a brain tumor - MS was the milder of the two!

Q7: Do you think having MS decreases your chance of finding a life partner?

I can't comment on this because of my answer to Q6, but why the hell should it?!

Q8: Do people treat you differently after hearing about your disease?

Yup.
Negatively.  Awkwardly.  Skeptically.  And it really is painful and lonely to know that the people that you thought cared couldn't give half a shit to try and understand what you're experiencing.

Q9: Do you find that most people are understanding when you need to reschedule plans?

Eh.  I kinda have a reputation as a flake.

Q10: Does MS hold you back from living a full life?

Hell no!!  As I always say, "I have my MS, it does not have ME," and if I want to have a full life, that's my choice and it can't stop me!
I mean, it can really, really try, but I won't let that happen!

Love to all, I really liked this one!!  I look forward to seeing other responses :)
MSloan