In late May 2020, as COVID-19 cooled down in Tunisia, which I currently call home, some new friends whom I met just prior to confinement invited me to their home for lunch to celebrate our new freedom. Around the same time, before Tunisia opened its borders to international travel we planned a week-long road trip inside the country with another new friend.
In the lead up to both events, I was so excited. Pretty quickly, however, this excitement was overtaken by a familiar, exhausting discomfort. I am sick of the facade, but I fear what will happen if I drop it and come clean.
For the lunch invitation, my friend said, “I’ll make a good lasagna for us.” For the road trip, my other friend talked about going for long hikes. Both sounded wonderful. Fuck.
Both innocent proposals were direct bullets in my heavy, exhausting facade of normalcy. I want people to see me as normal – I love to eat, and I love Mother Nature. Both are true, with a few gigantic exceptions, which risk putting me in a pitiable, weakling category.
The solution is so clear. All I needed to do was explain to them my reality: I have MS. I don’t eat meat…or dairy…I avoid added salt, oil, and sugar. Alcohol, after a five minute buzz, often makes me feel like shit. Oh, and I have walking fatigue after roughly a mile of walking. What is walking fatigue? Wellllll…
I hate being a damn buzzkill. A poop in the punchbowl. Add to that my assumptions about people’s assumptions about MS: wheelchairs, helplessness, invisible yet disabling ailments of the brain, eyeballs, bladder, legs, etc etc etc – you name it, most sources say that such things will happen to someone with MS. People don’t like unpredictability. Those who survive cancer are survivors. Heroes. Nobody survives MS. The assumption is that you are increasingly miserable. I know that’s not true (read Recovering from MS, to start), but try convincing anyone of that factoid. The number of doctors who have told me to accept the miserable inevitable – even after my repeated fantastic MRIs – is like battling a tidal wave with a spoon.
No way in hell am I going to tell the truth to my fun new friends (nor to most people outside my tight inner sanctum).
The odd thing is, I love the way I eat, and I have total confidence in the science that underpins my dietary choices. I attribute my health 17 years after diagnosis to my “lifestyle choices.” I really could talk about that all day long.
Yet, I tell people I have allergies to dairy, which includes chocolate, cheese, and most things that 99% of humans associate with happiness. I tell them that I don’t eat meat by choice; vegetarians are more normal nowadays, and they aren’t pitiable or scary. And I say that I have a sore knee: everyone these days seems to have bad knees. My knees are perfectly fine, but by blaming my knees, people understand, give me a pass, and move on to another topic. One friend told me she feels bad about eating cake and cookies around me, given my allergies. I assured her that I do not feel deprived (that’s the truth) because (a) fresh fruit is like a dessert to me, and I love it (truth), and (b) I am grateful to avoid the allergic reactions from eating the wrong stuff (truth, except “allergy” is my code word for worsening MS). I don’t trust that friends would be open with me about their feeling bad for me if it was based on MS.
Wouldn’t good friends respond positively if I tell them the truth? 87% probably.
But what if they did not? I remember as a very young child (roughly 7 years old, so I can be excused for being dumb) learning that a woman in my neighborhood had MS; she scared the shit out of me for reasons that I cannot explain today. I just could not conceive of a good life with a cane. I felt sorry for her and wondered how in hell her husband could love someone with a disability. What if my honesty today scares people away? That cat will never get back in the bag.
Prior to my lunch, I couldn’t find the right time to insert all that heavy stuff in a breezy way. I just offered to bring food that we could all eat so that my friends didn’t have to go to extra trouble. They declined my offer, but I personally felt the stench of a being a big pain in their asses. I should have just told them, but I was stuck in fear of their fear.
I probably missed an opportunity to be vulnerable – as Brene Brown, who has a PhD in this stuff, said in her TED Talk: The Power of Vulnerability. My friends might have (probably would have) surprised me in a good way. Truly, as hard as I try, I am not exactly sure what I am afraid of…but I keep thinking that I can’t get the cat back in the bag if I make the wrong judgement to be honest.
My boss has invited me to his house countless times, and they make amazing food. And they like to drink. Mostly, I scoop everything but the meat and I try not to conspicuously ignore the food with cheese. They offer me wine, and I accept it, though I feel really, really shitty the next day. (I drank a ton in college, night after night, but now I pay for those years of mindless, happy drunkenness.)
Both the lunch party and the road trip came and went, and mercifully, I avoided the topic altogether. We had fun, and I avoided letting the cat out of the bag. I suspect the readers of this blog will wonder why I don’t just come clean: tell anybody and don’t let their opinions affect me. I wish it were that easy. I am still not sure why it is not. What is the worst that could happen? Gulp.
3 thoughts on “A Poop in the Punchbowl”
I haven’t read one of your posts in awhile. Thank you for sharing. It is a good reminder to me about your inner dialogue. And because you are fundamentally the same person I have known for 30 years (and I guess more than half of that time, you’ve been “a person with MS”) I have never thought of you pre-MS vs post-MS. To me, it is not a significant part of who you are. But that is because I’m blissfully ignorant of the day-to-day work and decision-making and mental effort and emotional energy that you invest into managing your MS as successfully as you do. This post helps me be a little less ignorant. Thank you for that. And side-comment: I was just introduced to Brene Brown via a LCSW I recently met. Haven’t read anything but listened to the ted talk and just watched the Netflix special. I like her. Still figuring out how to make her insight relevant to me, but I like her.
I love your posts. They are long, but entertaining! This last one, over a year ago (!) prompted me to comment. I also have MS. For a long time I didn’t tell people because I didn’t want them to see my disease first before ‘me’. When I’m eating out I say exactly as you do, the I’m a pescatarian who is allergic to meat (I do eat fish, especially when travelling). But two days ago I listened to this podcast and keep considering it’s message – Minutes 26-31 are worth considering. I think on some level it’s worth keeping your disease a secret except with your inner circle, but it’s a very personal choice! https://open.spotify.com/episode/2PxexkWt9RGU3fT9h3VdHB?context=spotify%3Ashow%3A7i4OI4Oi7kym2fSauBukJp&dl_branch=1&si=hPlAMQtLQoWiK9_U8jj-xA
Oh and this blog talks about the same issue. It’s a real challenge for us people living with MS – who to tell, and maybe how much/how do we explain the implications? https://trippingonair.com/2021/04/whats-the-big-deal-about-coming-out-with-ms.html