I Kind of Need You to Stop Asking if I'm "Better"

It’s rare, in this wacky journey that is my chronic-illness-having, that I openly express frustration. That’s mainly because I don’t think it’s all that productive, and I have had productivity beaten into me for all of my honors student life. I’d much rather spend my time talking and commiserating with other cool, chronically ill people, or educating friends and family on what it’s like to have a sickness that isn’t going away. But some days, the frustrated part wins. It wins hard.

The frustrated part comes out when my steroids are giving me insomnia, and I only slept three hours a night this week. The frustrated part comes out when my hair starts falling out every time I touch it. The frustrated part comes out when I realize my meds have given me a weird hand tremor and suddenly I feel way more like someone’s great aunt than like a 24 year-old.

But socially, the frustrated part comes out when someone asks the question I’m constantly dreading: are you feeling better?

The reason I dread this question so actively is because there are no answers to it that will make the people in my life happy–– which is something I desperately want to do. I would love to tell you that yes, in fact, I have miraculously come out of this flare and it will probably never happen again and, as it turns out, I am healthy as a horse. Turns out, though, that would be as honest as telling you that I just met Beyonce and she asked me to model her new athleisure line. Which is to say it’s a big old lie, or just a dream I had once.

I’m not a total pessimist. Some days I am feeling better! And in the moment you ask, I just might be. But the problem is, I’m living in a really long flare. And when this flare ends, I’m not sure how long I’ll have until my health turns on me again. That’s the nature of chronic illness: unpredictability. I have good days and bad days. Honestly, it changes down to the minute. Last week I called my mom in the morning to tell her I was feeling better than I had in weeks and I was ready to take life on–– and by 6 PM, I was in so much abdominal pain I was crying on my bedroom floor, popping Norco like it was a pill in Ibiza. (Am I using that pop culture reference right? I haven’t been out in a while.)

So when you ask if I’m feeling better, I feel obligated to tell you yes, because it’s understood that it’s what you want to hear. If you have a chronically ill person in your life, I’m not saying you should assume they feel like shit all the time and not ask at all. But there are ways to talk about illness that come off as genuinely curious and helpful that don’t make the person in question feel bad for not feeling better. Great things to say include “Hey, just checking in to see how you’re feeling. Thinking about you,” or “Can I come over and watch Unbreakable Kimmy Schmidt with you until we both melt into the couch cushions?” Showing you care and are trying to get it will go a million and one miles to getting someone to open up to you about how they really feel–– which might not be better, but will be important to hear.

Love, Butterflies, and Ginger Ale.

There are certain things in life you don’t appreciate fully when you’re young. Like taking naps, or having a spring break. Or your relationship with your grandparents.

I was very close to my Gramma as a little kid–– she babysat us often, and I remember doing puzzles with her, or taking the bus to the mall (she never, ever drove), or watching soaps in her living room. I remember playing rummy with cards that had baby zoo animals on them, and that she always had snacks we liked at her apartment. I remember that she had a popcorn ceiling–– something I didn’t have a name for until many years later, but that I always just associated with Gramma’s house.

She liked butterflies, and anything made of pewter, and reading, and she really loved Taco Bell, which in retrospect is hilarious for its incongruity. And she was sick, pretty much always. Not in the alarming way most people’s grandparents are sick, where it signifies that death is coming–– the chronic kind, where most of my childhood was spent in the back of my mom’s van, chatting with her while we drove her to doctor’s appointments.

I was young when she developed dementia, and while she technically lived well into my college years, all of my viscerally happy memories of her are squeezed into my childhood. I was diagnosed with Crohn’s disease when I was 17, long after her mind was already fairly out of sorts. And now, at 24, when a flare has taken me into the territory of truly, chronically sick person, I find myself missing the relationship we could have had now that I am an adult.

When you’re sick, you seek out people who might best understand. It’s not anyone’s fault if they can’t understand–– in fact, it’s great news for your loved ones if they can’t fully understand. It means they’re healthy, which is all I want for the people in my life. But sometimes, when symptoms are bad and you need a commiserating ear, another chronically ill person is the best possible option. Especially when that person is family.

I know if my Gramma were around, we could sit around and watch TV, and I wouldn’t feel bad at all bitching to her about how my steroid taper is making my hips hurt so bad that I can’t sleep. She would probably tell me about her own joint pain, and messed up sleep schedule, and how getting from point A to point B leaves her winded. We would probably make a joke of it and drink some ginger ale and then she’d force me to take home a stuffed animal she had in her apartment.

But even though she’s not around, I feel like I can learn about living with sickness from her even in retrospect. While she definitely didn’t live life mistake-free, she did a lot of things I can take away for myself. She threw her energy into loving her grandkids. She made us feel special when I’m sure she wasn’t feeling that way herself. She read a lot, and tried to keep her mind up even when it was fighting against her–– the nurses in her assisted living facility had to repeatedly clean out her room because she was hoarding books, a fact about her last years that I love a lot.

So on days like today–– her birthday–– I will get my own struggles together and take away the things she would have wanted me to. And I will also drink a ginger ale in her honor.

TBH

It is 6:08 PM on a Friday night. In summer. In the third largest city in America.

I am sitting on my couch, listening to a relaxation playlist on Spotify while my cat kneads my stomach fat.

The excitement of my night will likely be what marinade I choose for the fresh salmon I bought on my way home from work, and what movie I choose on Netflix.

Such has been an accurate description of almost every Friday night I’ve had for the last 5 months.

The most exciting thing I did this weekend was read in the park

Sometimes, this is fine. Sometimes I relish in the slow and hazy schedule of not being able to have a real schedule. I tell myself that I am super zen about the whole thing and that I have accepted my current lot in life. That I’m cool with spending age 24, the so-called “prime of my life,” in a health-induced purgatory because “it is what it is.” Sometimes I mean it.

Sometimes, this is really not fine. This week, I had a good day. A day where for most of it, I pretty much forgot I was sick at all. I went grocery shopping, did some cooking, got my nails done, and went to a wonderful dinner with a group of my closest friends. I ate great food on a patio in the warm weather and told stories and laughed and read our horoscopes. I actually found myself thinking, as I walked home, “maybe I’m fine. Maybe this sickness is going away, and I’m being overly-cautious by passing on social plans for fear of making myself worse.”

The next day was one of the worst symptom days I’ve had in a long time. It felt personal–– like a jab from the universe, saying “you think you’re normal? You think you can do all the things a healthy person can do and not pay for it? You can’t. In case you’d forgotten.”

That night, I laid in bed trying and failing at sleep. I was under the assault of a bone-crushing fatigue that made it impossible to do anything but half-way watch Law & Order reruns and stare at my cat until he got unnerved and turned around.

Tuesday night, me being a normal human at dinner with friends

Sometimes, I have a wise thing to say. A piece of advice. Something I’ve learned from my illness. Something being sick has made me more aware of that I’m thankful for.

Other nights, like that one, or tonight, I don’t. I’m just mad, and sad, and sick. Usually I think I’m making my illness more palatable for the universe by adding a happy spin on the end. “My joints hurt so bad I can’t think–– but it’s fine, I’m really getting to catch up on my reading!” I rarely leave it at “Hey–– I feel like a pile of hot garbage today. That is all.” But I figure sometimes, it’s more honest to leave it at that. And if I truly want people to have awareness of what it’s like to live with a chronic illness, I should be honest, right? Sometimes you have a day that doesn’t end with a bright shiny spin of positivity, and that’s okay, too. Your life is not a PR angle, it’s just your life.

So in the spirit of honesty and not sugarcoating: Hey–– I feel like a pile of hot garbage today. That is all.

I Do Not Have As Many Hours in a Day as Beyonce.

Between #GirlBosses and side hustles and everything else Instagram and Khloe Kardashian is always telling us, it’s pretty clear that productivity is important nowadays.

And generally I think that is great! Encouraging people to do more and be more sounds like nothing but a good thing, right? Except it’s possible that it’s trapping us. Because when you place all your self worth in your productivity rather than your personality, or just your own human goodness, how do we live as people outside of our accomplishments?

Sure, you “have as many hours in a day as Beyonce.” But Beyonce has a trainer, and a team of nannies, and stylists who make her look awesome. Do not judge your personal value by your ability to keep up with Beyonce, please and thank you. You will go insane and spend a lot of money on bodysuits. But more importantly, maybe don’t judge your personal value by your ability to keep up with anyone. Whether it’s a co-worker or a sibling or a mommy blogger whose handmade cakes make you feel subpar, try not to sit around wondering why you can’t get as much done as them, or have their level of success. Everyone’s lives always seem really sunshiney on the outside, but it’s possible that on the inside, that mommy blogger is struggling to keep up just like you. At the very least, her kitchen is probably covered in organic flour.

I think I'm going to start measuring my productivity in delicious teas consumed, books read, and days spent in the park.

So what if we all just cut each other a break? What if we stopped glorifying the hustle? What if we instead started glorifying things like taking care of yourself, writing your sister a letter to make her smile, re-reading your favorite Harry Potter book in the sunshine, or just making it through the day? What if we placed value on the things that made us happy, rather than the things that made us appear outwardly valuable?

I’m guilty of obsessing over productivity. I’ve always liked a list, or something exciting to put on my resume, or just feeling at the end of the day like maybe I somehow was a little closer to my best Beyonce-like life. But being ill has put a lot into perspective, including what a true trap the rat race for productivity can become if you let it take over. I’m not saying we should all lay around and do whatever we want all the time–– the world would stop working and no one would be staffing Burger King to make me Mac and Cheetos. But what I am saying is not to beat yourself up if tonight, all you want to do is drink a glass of wine and watch Veep. The “hustle” will still be there in the morning.

And putting the onus of life on productivity is a dangerous mental trap for the chronically ill. I know that I can’t “do it all,” and that’s okay with me, but when I see people pushing for us all to constantly have some exciting new project or business plan, it’s exhausting. Some days it really is okay if all you did was get out of bed. This is true for everyone, but especially true for those with mental and physical illnesses. Try not to beat yourself up if your disease means that you aren’t “on track” with others. I try to set smaller hurdles of productivity that feel more realistic than taking on the world or getting a book published by next year–– things like meditating (almost) every day, cooking for myself, or organizing my bills.

It’s also important to remember that often, rest is productive. If your body is struggling, ignoring it in favor of powering on will burn you out and leave you in worse shape than before. As hard as it is to feel limited by a disease, it’s even harder to deal with a flare after ignoring signals from your body to slow down. So maybe redefine your notion of productivity: restful activities like coloring, watching a movie that makes you smile, or even taking a nap can be incredibly productive for someone trying to keep their health in check.

I guess what I’m trying to say is that human worth is not measured in productivity–– or at least, it shouldn’t be. It should be measured in things like friendship, and days where you felt genuinely content. It should be measured in how you make people feel, not just checking off boxes of what you think you’re supposed to accomplish. Once you get a team of nannies and assistants and personal shoppers, then you can redefine your productivity to include building an artisanal cheese empire.