Adjusting to Unwanted Change
Tips from your friendly chronic illness sufferer
I’m not a COVID-19 expert.
But I am someone with a chronic illness — an illness that will never go away, and one which has completely changed the way I live (despite my many attempts to behave as if that weren’t the case). Recently, I’ve noticed similarities between the way I had to adjust and adapt to my condition, and the way we’re all struggling to adapt to this new and uncertain reality.
So I wanted to share some things I’ve learned along the way in the hopes that one or more might be helpful for you, especially when it comes to social distancing and facing an uncertain and unwanted future.
I know not all of us are able to practice social distancing right now. And I have immense gratitude and respect for all of the essential workers on the front line. I don’t pretend to know what that must feel like, but I do know the feeling of clinging to a past reality because the one you’ve been thrust into is uncertain and bleak. So, these are some things that have helped me. Maybe they can help you, too.
1. Commit to your new normal.
No one knows how long this will last, or what short- and long-term effects it will have on our health, the health of those we love, our normal way of life, and our economy. The future is uncertain. And our brains hate uncertainty (studies have shown that people are more stressed by the possibility of pain than the certainty of it).
So where does that leave us, given that our future is uncertain? My best recommendation is to invest in this new situation as if it will last indefinitely. I’ve seen a lot of pieces recently reminding people that this is temporary. And while it’s true that this situation will not actually persist indefinitely, in my experience holding out for that better future state has only made the process of accepting the current one more drawn out and difficult.
My advice is to move yourself toward acceptance as quickly as you can. That means actively and deliberately finding new ways to move your body, be social, get sunlight, have fun. Waiting for things to go “back to normal” is a recipe for anxiety and discomfort. And while the alternative may not seem too peachy either, the sooner you’re able to get on board with this new way of living (for however long we have to live it) the more you’ll be able to develop habits to make it more tolerable.
2. Heed medical advice.
There’s a lot of denial that goes into having a chronic illness. The first few years of being sick, I complied with doctors orders when I was in an acute flare. But as soon as I felt better, I would often get more lax: skipping dosages, waiting to refill medications until I had no pills left, sometimes stopping medications entirely because I felt like I no longer needed them.
Do not do the coronavirus equivalent of this. Getting careless about social distancing just because you feel fine or because it seems that cases are going down in your area is not ok. Don’t mistake being safe because of social distancing measures for being safe and therefore no longer needing social distancing measures. Don’t take matters into your own hands, or worse, take out your anger at being in this crummy situation by endangering yourself and others. It’s ok to feel angry. Just do it while alone in your apartment eating Rice-A-Roni and frozen veggies. And wash your hands first.
3. Lean on people.
When I was first diagnosed with Crohn’s Disease, I felt extremely alone — not just physically (I had to stay in when most of my friends went out) but mentally. It wasn’t until I started opening up to people that I began to feel a little less isolated. A major hurdle back then was that most of my friends had a hard time understanding what I was going through because they’d never been through it themselves.
The good news is that we’re all going through this together. While each of our specific situations differ, we are collectively worrying, grieving, going stir crazy, and craving interaction. If we’re all already in this together, let’s truly be in this together.
Whether that means talking on the phone to a loved one, holding virtual game nights, bingeing Tiger King with friends, or joining a local bar’s virtual happy hour, finding ways to stay connected is a necessity.
4. Get a great therapist. Hell, any therapist will do.
You probably have a lot of feelings about this situation. Dealing with a health pandemic, a monumental downshift in our global economy, and a complete transformation of your everyday routine is understandably pretty traumatizing. Having a space where you can talk openly about what you’re going through is absolutely vital. A therapist doesn’t give you a magical answer to happiness and health, but they will help you develop self-care and self-reflective habits that better equip you to handle challenges as they come up. They’ll also make you feel heard, validated, and supported.
Most therapists have transitioned entirely to virtual appointments, and there are also some great and inexpensive online options — Talkspace, BetterHelp, and Online-Therapy to name a few. While these sites are often not covered by insurance, you can submit them to an FSA or HSA if you have one.
If you can’t afford those, there are hundreds of free guides, apps, and tools to help you manage your mental health.
5. Don’t read all of the news.
Anyone who’s ever been sick knows that Googling or WebMD-ing your symptoms is a bad idea. Not only will your anxiety and negativity bias cause you to focus on the worst case scenarios, you’ll also likely get inaccurate and unhelpful information.
The situation we’re in right now is not dissimilar. While keeping yourself educated is important, reading every single thing that every single outlet shares about coronavirus is not a good idea. You will make yourself terrified and overwhelm your brain with too much information for it to successfully parse out what’s most important.
My advice is to pick 1–3 sites that you like (I prefer the scientific / medical ones: Ars Technica and WHO are some faves; I’ll visit Washington Post for more news-y news, but only sparingly) and limit yourself to those. Follow people on Twitter who are sharing helpful information, not those stirring up anxiety and frustration.
And finally, limit the time you spend on these sites. If you’re having trouble sleeping, try a no news after 8pm rule. It’ll still be there for you when you wake up in the morning, I promise.
6. Learn something new.
Right now, we’re focused on two things: the loss of life as we have known it, and fear and uncertainty about the future. While these feelings aren’t going to disappear, we can add another one to the mix: the joy of learning something new. What you’re experiencing now is the absence of old behaviors and pastimes. Fill some of that space with the presence of new ones. This gives your brain something to focus on that is positive and engaging.
A few months after I was diagnosed with Crohn’s Disease, I signed up for my first improv class. Though I had never done anything like it before, it gave me something fun to do at a time when I was mostly feeling sad. It’s no exaggeration to say that these classes changed my life (I still improvise and teach to this day) and they cemented the importance of finding something new and active to do during periods of grief.
Months ago on a whim, I signed up for an in-person French class at Coucou. By the time the start date arrived, New York was already practicing strict social distancing so the school moved all of its courses online. I am so happy that I signed up; just as with improv in 2002, french in 2020 has me focusing on a new, fun skill rather than dwelling exclusively on what’s been lost. If you can’t afford to sign up for an online class, Duolingo is a free alternative.
If language classes aren’t your thing, there are a ton of other options for online classes right now, many of which are free or low cost: online yoga, online dance lessons, art lessons, baking classes; the list goes on and is only growing as more companies and individuals make the transition to virtual services.
7. Find a calming space in your home.
When I was first diagnosed, one of the hardest things was having to stay home (and often, in bed) when all I wanted to do was go out and be a normal college student. After much trial and error, I found something that helped: intentionally creating a space (whether that’s your bedroom, home office, or even the corner of a shared common area) that feels calm, clean, and restorative. For me, it was my bedroom. I bought soft, luxurious sheets and a pillow-top mattress pad. I cleared my side table of its usual clutter. I lit candles and eschewed the overhead dorm lighting in favor of salt lamps.
Whatever that space is for you, build yourself a MF sanctuary. Finding a spot in your home that feels special, relaxing, and inviting helps big time when you are feeling frustrated that you can’t do more things and that you have to stay home. Whether that means buying a cozy blanket for your couch or hitting up your artist friends for prints of their work to hang on your walls (added bonus: this puts $$ in the hands of people who likely don’t have much income right now), while you’re stuck inside, you might as well make it feel nice in there.
If money is tight, there are plenty of free ways to breathe new life into a room. Try repositioning your furniture, color-coding your book shelf, painting your generic plant potters, or any of the tips found in articles like this.
8. Allow yourself to not try everything.
When I first got sick (and still to this day, 17 years later) everyone and their mother (and their mother’s mother, and her butcher) had a different recommendation about what I should eat, how much I should sleep, what medications I should be on, what supplements I should take, what alternative healing practices I should try.
Right now, you may feel inundated with recommendations from people and media sources for supplements to take, technologies to try, foods to stock up on, ways to stay active, ways to stay productive, ways to not worry about staying productive.
[I’m aware of the irony here, as you’re currently reading something I’ve written on more things to try. Pick one that resonates with you, and throw out the rest. I won’t be offended.]
It’s normal to feel pressure to try all of the things, especially if you are scared. Sometimes, though, the pressure to try everything can be even more exhausting than the situation itself. So allow yourself to be choosy and don’t let yourself feel guilty for not reading every article and trying every new immune-boosting supplement around.
Science tells us that we can’t focus on more than a few goals at a time. Some studies suggest we should just choose one. So pick one or two things to try, and let that be that.
9. Be patient with yourself.
This is hard. You’re going to feel like you’re doing better, and then you’re going to have a day where you burst into tears because your Instacart delivery got delayed and then you waited on hold with their customer service for two hours only to be hung up on as soon as they picked up. (I’m still mad about this.)
You’re also going to fuck up. You’re going to read too many fear-mongering articles. You’re going to forget to sanitize a toilet paper delivery. You’re going to spend days without exercising because honestly how do you even do cardio in a small NYC apartment.
You’re going to feel like crap some days. You’re going to feel wildly unproductive. And all of that is ok. All of that is normal. Take some pressure off and be kind to yourself in those moments. One trick I like is to ask yourself, how would I treat my best friend right now? Then treat yourself that way.
Change under normal circumstances is hard; unwanted and unforeseen change is even harder. But human beings are adaptive. We’re resilient. With time, things get easier, they always do. And remember, we’re all in this together.
