I was talking to someone last week who has a young son. She said it’s difficult to find anything else to talk about, because he’s such a huge part of her life now. But she makes an effort to find other topics, because she understands it would get annoying for some people to only ever hear about her kid.
My stomach did a little flip. Here’s the thing -- social norms have never come easily to me. I’m a fairly awkward converser, and the brain fog doesn’t help. You know when someone
who makes you really nervous comes to talk to you and your mind goes blank, so you just start blurting out random things hoping it’s better than the nothing that you came up with? That’s me all the time.
When I’m in a conversation, I tend to talk about whatever is easiest to access in my brain. Typically that means whatever I’ve spent most of my time doing or thinking about that day. This month, I have had two or three days total in which I felt energized and well enough to actually do everything I wanted and to feel fully happy. I had zero symptom-free days. Not a single day did I last 15 waking hours without diarrhea, a migraine, burning sensations down my spine, lightheadedness, palpitations, or something else. So when someone says “what’s up?” or I’m trying to think about what’s been on my mind lately, it’s hard to come up with anything that doesn’t involve my illness.
It’s not just that I don’t feel well. The ways in which I don’t feel well also impact pretty much everything I do throughout my day. I have to wake up 2 hours early in order to be well enough by the time I get to work at 7:30. I have to strategically plan what food and medications to bring with me. I have to decide things like whether to keep the lights off in my classroom all day or to allow students to see but get a migraine. I have to constantly monitor how I feel and take appropriate actions (like sitting while teaching, putting my feet up, eating snacks, stepping outside in the cold during a hot flash, etc) in order to last the full 8 hours I’m now expected to be at work. I often get sick while at work and have to find ways of managing a classroom while also managing symptoms. Once my work day ends, I have to decide whether to give in and nap the afternoon away or to actually try to lesson plan, socialize, exercise, etc.
Every single time I eat, go to the bathroom, turn on the lights, drive, walk, or make plans, I’m weighing a million factors that all involve my illness. It’s hard for it not to be on my mind 90% of the time. So when I go to have a conversation, yeah it feels pretty weird to try to avoid talking about something that I think about more than any other subject. Not only that, but it’s wrapped up in so much of my feelings day to day. Yet in conversations, I hear it pour out of me and the voice in my head shouts “stop it! No one wants to hear that! Tell them about something else!” So I switch subjects and tell about what I’m teaching or a funny thing a student said or a cool new hobby I’m trying out… except it feels really ingenuine to tell these stories without the side comments about how my illness also affected all of those stories. I withhold those details, but it feels less truthful.
I also have the part of me that withheld health complications for years out of shame. That part of me screams “no! You’ve finally broken the silence! Don’t keep it in anymore!” It’s so hard to deny that voice, because every time I tell a funny story but skip the part about the agonizing gut pain and explosive diarrhea, it feels like going back into the closet of body shame. I never want to feel that way again. I want to bust down those doors of stigma like the f**ing chronic illness superhero I am… but no one wants to hear that all the time. Sometimes, I just need to be a friend or daughter or coworker who can have other conversations.
Then there’s the issue of people who haven’t seen me in awhile asking “what’s new?” What do I tell them? Nothing new and exciting happens in life when your week looks like struggling to make it through the work day so that you can pass out on the couch and not get up until dinner and bed. Sure, for awhile I shared about my wedding, or my new apartment, or my honeymoon. But those things are over. I’m still at the same job I’ve been at since grad school. As I stall like a deer in the headlights, the huge chronic illness elephant in the room floats over my head. What’s really new is I’ve added three new foods but also developed two new symptoms. What’s really new is I spent the last month either on the toilet or sprawled on the couch, and my left shoulder hasn’t been in its socket all week. What’s new is that I’m excited about my appointment with a specialist in NYC, or that I can now walk to work without pain! Either I share the truth and am met with uncomfortable responses or I simply say “nothing much is new with me… how about you?” I erase my own experience and fail to connect with this person I have missed the last few months since I’ve been able to see them.
Chronic illness is just one part of the beautiful, messy, complex person that I am. I know I have so much else to offer! So many passions, skills, vulnerabilities, aspects of personality… but the reality is that I don’t have time and energy to practice many of those things right now. I can’t play rugby anymore. My hands can’t always grip a paintbrush. My back can only sit at a piano for so long. Meeting new friends knocks me out for the next day or two. Exploring new passions take energy that I don’t have. While I know confidently that I am more than my illness and that someday I will be an artist, a mom, an explorer, a social justice advocate, etc, right now I’m just trying to get better. My days are spent just trying to make the next day less painful.
That may sound depressing, and I’ll be honest on some days it feels depressing, but mostly it feels hopeful. I keep trying for something better because I do have hope that someday soon I can paint every week and have energy for friends. Someday I’ll be able to go out to a restaurant and still be upright by dessert. I truly believe this. So I’m not going to waste time right now. I know who I am and what makes me beautiful. I need to spend this time fighting for a healthy and self-sufficient future.
So when it comes to conversations, and finding what to say when my mind is filled with fog, I will try to support social norms. I will try to not make others uncomfortable or bored. I will try not to sound like I’m complaining. But I will also not apologize for expressing my existence. Because it is some of the most important work I’ve done in my life, I’m incredibly proud of it, and it’s my honest reality.