Disclosing Our MS Diagnosis, Hilarity Ensues
Recent statistics show that .125% of the US population lives with MS. Outside of those people and their families and friends, and maybe fans of The West Wing, I’m willing to bet that little to nothing about MS is common knowledge. We didn’t fully consider that when the time came to tell our friends and family. We have family in Peru, in New Zealand, in Holland, and close friends all over the world. In some of these countries, MS is nearly nonexistent. When we started making phone calls, we were hasty, we were tactless, we were indignant, sometimes we were nonchalant, sometimes we were too intense. We couldn’t get it right. My favorite conversation happened over text between Chris and my brother Danny, while Danny was getting boozy at a crowded bar watching a Real Madrid game with a bunch of his friends:
Danny: Are you watching the game? What’s up with Pepe’s hair!!
Chris: I know, it’s ridiculous!
Danny: Bullshit call!!!
Chris: I know, the game should be 3–2 Everton right now!! By the way, turns out I have MS.
Danny: What? Thats not funny Chris.
Chris: Yeah, we found out this week.
Danny: OMG. I’m so sad right now. (sad face emoji)
That was not very nice. It was a bit funny, and made us feel a little silly during a pretty bad week. But it was still not very nice.
When we called Chris’s parents to explain, we blew it even worse. I think we used all the wrong words; degenerative, incurable, neurological, injections. Hearing the tears in his dad’s voice over the phone broke our hearts. His mum keeps her emotions closer to the vest, but we could tell she was heartbroken she couldn’t be here with Chris. My family wanted to be there for us, but Chris was hurt, sad, missing his parents and siblings, and just was not ready to outsource that support to his in-laws yet. Eventually though, it was so important. My mom had knitted him hats and scarves, because she thought MS makes people super cold, maybe? My siblings checked in regularly and tried to learn as much about MS as they could. Friends sent articles, therapeutic diets, offers of support, constant reminders that they loved Chris and would always be there for him.
No one is perfect. When you receive bad news about someone you care about, reactions are unexpected, unpredictable, and sometimes disappointing. For the most part, there was constant support via phone, Skype, WhatsApp, people saying all the right things. It was a tough time, and we were sensitive about those reactions. There were definitely people we didn’t hear from for months after they heard the news. That hurt Chris, and so it made me livid. There were people who reacted with anger and self-righteousness about how long it took them to hear the news. And, of course people who tried to say the right thing out of love, but it stung. The one we get a lot is “I know someone who has had MS for years, and they have no symptoms, they are fine!” That one is tough for a few reasons. For one thing, to me that didn’t even sound like MS. That could be anything. For another, there are different kinds of MS. At the time, we didn’t know what kind Chris had. Now, we know RRMS can turn into progressive MS over time. Thinking and worrying about what his MS would look like, compared to someone’s non-specific friend who may or may not have MS, was not the best use of our time.
Chris is the epitome of grace and dignity. At first these things hurt him, and so filled me with anger like the fire of a thousand suns. But quickly he put himself in other people’s positions and naturally understood where they were coming from. I am ashamed to say I held on to that anger longer than I should have. I was devastated for him, and worried and anxious, and I expected a lot from our inner circle, and was ruthless when I perceived they were letting Chris down. In the end though, I remembered to be the partner he deserves. I remembered that I am not perfect, and that we were giving people who loved Chris some pretty bad news, about a disease they probably knew nothing about. Some needed time to process the news and cope with it. Some were trying their best to say things that would ease our anxiety and apprehension because they loved us. Some were hurt and angry on our behalf, and it came out in ways I didn’t understand then, but I do now.
That stuff normalizes as months and years go by. We learn to provide people with the information they want and need about Chris and his health. We become less sensitive and afraid. We start to make jokes about MS. We start to feel hopeful when people mention someone they know with MS who is doing great. (Although that one still stings sometimes.) Most importantly we remind ourselves that we are not in this alone. We are incredibly fortunate to have a remarkable support system in our family and friends, and we are grateful for that.