Multiple sclerosis, Struggles, Uncategorized

The Do-I-Tell Conundrum

It was really a no-brainer for me to tell my family and close friends about my MS diagnosis. Who else was going to take pity on poor me when I needed a shoulder to cry on or I had chocolate cravings?

That didn’t mean it wasn’t hard. I have a might prideful streak to me, and I felt like even uttering “MS” was admitting defeat. And saying it aloud those first days gave it power, made it real.

Harder still was telling others not in that inner circle. I made a mental list – whom do I tell? And how? This isn’t the sort of announcement for which you send out little embossed notes.

I knew it would be impossible to keep under wraps. I tell one person, and it would spread like wildfire or mono at a high school.

Hardest of all was telling my employer. At the very least, I had to share my hospitalization with supervisors. But I was terrified of divulging my horrible truth, especially when it was clear that I was still in the throes of an exacerbation.

C.J. Cregg: What are you taking?
President Josiah Bartlet: I don’t know. My wife hands me pills, I swallow them with water.
Sam Seaborn: Sir?
President Josiah Bartlet: Vitamin C, Vitamin B. Is it possible I’m taking something called euthanasia?
Sam Seaborn: Echinacea?
President Josiah Bartlet: Ah, that sounds more like it.

The president was on my mind. The fictional one, that is.

Being the TV junkie I am, I made the logical leap right to The West Wing and Josiah Bartlet. I am a big Aaron Sorkin fan going back to his Sports Night days.

So WWJBD?

Well, he hid his relapsing-remitting MS from just about everyone. Granted, his employer is essentially the electorate, so you could see where showing weakness might tend to be bad news for his job future.

But then he had flare-ups. It’s been forever since I watched the show, but I do remember the health crisis and that goosebump-giving episode that capped Season 2, when he was considering running for re-election.

Abby Bartlet: We had a deal!
President Josiah “Jed” Bartlet: Yes, we had a deal.
Abby Bartlet: Yes, Jed. Look at me! Do you get that you have MS?
President Josiah “Jed” Bartlet: Abbey…
Abby Bartlet: Do you get that your own immune system is shredding your brain? And I can’t tell you why. Do you have any idea how good a doctor I am and that I can’t tell you why?
President Josiah “Jed” Bartlet: I’ve had one episode in two years.
Abby Bartlet: Yes, but relapsing-remitting MS can turn into secondary-progressive MS oftentimes ten years after the initial diagnosis which is exactly where we’ll be in two years! Do you know what that’s going to look like if it happens?

And then in Season 3, the president was censured by Congress for the whole MS cover-up. While my situation will never be that convoluted or that public, I felt just as vulnerable as the president.

What if they thought I couldn’t still do my job? Scarier still: What if I wasn’t able to do my job? The MS story arc on The West Wing showed the president still able to be leader of the free world, which is, let’s face it, a far more demanding job than mine.

Admittedly, I struggle at work — to go above and beyond like I used to, to multitask at the level I once did, hell, to even make it through a complete 8 hours.

But I show up every day I can, albeit with a little less verve. And some days with a limp and a cane.

Just like President Bartlet. Art does imitate life sometimes.

 

11 thoughts on “The Do-I-Tell Conundrum”

  1. I miss the West Wing, but I hate that that story line exists because that means MS is real and that real people are affected by it. Thank you for courageously sharing your story. You are an inspiration to me.

  2. I think we’re at about the same place after our diagnosis, time wise. 6 months or so. I can tell you that owning my own business and working from home has made things real easy for me. My clients know I have MS, because it was pretty obvious, but as long as I make sense they don’t care.

    But if I had a job that made me show up at 8:00am I’d never be able to do it. So I think it’s good that you can still do that.

    At this point I’ve been disappointed by quite a few people who should be calling me every once in a while to talk. Or even people I called who should have been much more supportive. Now I don’t need that so much, so it’s really to late. However it did give me a chance to see our true relationship. For you, not having told some people, that might be scary, but after it all, nobody who I had an actual good relationship with was bad. There were many people I should have had a good relationship with, but after this, I can see we didn’t and it wasn’t my issue.

    On the other hand at least two people restarted relationships with me because of MS. How’s that for supportive?

  3. MS has slowed you down a tad, but you still manage to do more than many other people we know. You’re a kicka** web chicka and I’m proud to call you my friend. 🙂

  4. When I was diagnosed with PD I went directly to my boss and told her what was going on, thinking I was being a loyal employee. Now, thanks to my husband, I know that by telling them I basically put my boss in the position where if I got fired or laid-off for almost any reason I could sue under the ADA. Not what I intended but since I still have a job and still want to work I’m not complaining.

  5. The way you told me made me think that you owned MS not the other way around. And even if you struggle sometimes, you’re doing great work.

  6. T.V. junkie here too. West Wing and Sports Night were also two of my favorites! When I was first dealing–and reeling–with my RRMS diagnosis, the two celebs that were “coming out” with their MS at the same time as myself were one fictional (PODIS) and one real, Montel.

    It’s been ten years and I am doing well, in case you wanted to know. Your writings take me back to those scary days of uncertainty. It took me awhile, but I’ve found my new normal — and will you.

      1. I read right over that! In my line of work, I’m so used to seeing SCOTUS for the Supreme Court, but usually never POTUS. Weird.

  7. I came over from the AR Women Bloggers page and was debating if I would leave a comment or not (I’m a bit of a lurker sometimes)… but when I saw a post about the West Wing, how could I resist?! 🙂

    When I was first diagnosed with lupus, I didn’t tell a lot of people. I was afraid they would treat me like a “sick person” instead of a person with a chronic condition who is still able to lead a relatively normal life. But, that just got exhausting. I find the more open I am with people, the easier it makes my life. There are just days I’m off my game or days I can’t get out of bed. Sometimes the only explanation is “I’m having a lupus day”. Luckily they are few and far between now, but lupus is also a condition with flares and there are times when people just have to be understanding of my limitations. It’s a bit of a balancing act but, 13 years in, I think I’m getting the hang of it! I am sure you’ll be saying the same thing before long! Best wishes to you!!

    1. I’m glad you did! It’s reassuring to get a fresh perspective from someone who is tackling something similar. And it gave me a chance to do snooping on your blog! I love the resolutions post. All of those from last year could have been me, too.

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