[This post was co-authored with my friend Dr. Maggie Levantovskaya, who lives with Systemic lupus erythematosus]
If you’re anything like us, you probably spent a good chunk of 2018 dealing with your chronic illness, adjusting to new developments and learning from the hard knocks along the way. We’re not big believers in New Year’s resolutions, but we like to make lists and bring visibility to chronic illness, especially of the invisible variety. These New Year’s resolutions are an accumulation of some insights and hopes for the new year. We know that different conditions require different handling and that not all of these resolutions will work for everyone. We all have different experiences and life situations and that’s cool! But we want to share these resolutions to show solidarity, help allies support friends and family and let others with chronic illness know: you’re not alone.
- I will take meds regularly and as they should be taken.
- I will keep a health journal and bring it to doctors’ appointments. Even specialists shuffle their patients in and out, which makes it hard to call up all of one’s symptoms. If possible, I’ll bring a friend or family member as a health advocate.
- I will communicate my needs to caregivers, friends and family.
- I will be patient with them but not hesitate to walk away if they refuse to listen.
- I will be realistic with my day-to-day expectations of what I am able to do, and not be afraid to say “no.”
- I will remind myself that it’s ok to cancel a commitment, whether it’s work or fun, because of health reasons.
- I will prioritize physical health and rest over making money. I will not let deadlines rule my life.
- I will take breaks when working. I will take breaks when working. Rinse and repeat.
- I will resist social pressures to drink alcohol or eat foods that aren’t good for my health.
- I will practice self-care that works for me and remember that it’s not about buying shit. Self-care is also about establishing boundaries, unplugging and doing things that bring me pleasure, like reading fiction or going to a museum.
- I will remind myself that resting is not laziness. Fatigue is an actual symptom of my chronic illness. It’s OK for me to be tired and to rest.
- I will remember that sometimes things just need to stop and that’s ok. That can mean alone time in the bedroom, closing the door to my office and doing breathing exercises (or reading junk on the internet) or not answering my phone.
- I will avoid war or combat metaphors when talking about my disease. They do not accurately reflect my feelings and they stigmatize those who suffer or complain.
- I will use SPF every day. Most autoimmune diseases are associated with a higher risk for skin cancers and, with some diseases, sun exposure can trigger flares.
- I will make the effort to learn more about my condition. This can be emotionally exhausting so I’ll read in small bursts and take breaks to recuperate. I don’t always have to be thinking about my illnesses.
- I won’t be afraid to demand more explanations from doctors and tell them to break things down for me without worrying about “taking up time.”
- I will get my flu shot and tell others to do the same. I will gladly guilt-trip them if necessary.
- I will ignore useless suggestions about my illness and how to “cure” it. I will shut it down, kindly but firmly.
- I will remember to not always prioritize physical health over mental health. Therapy is not less important than seeing a specialist.
- I will get on a sleeping schedule and stick to it and not worry about accommodating my partner. We can be on different schedules.
- I will call out pill shaming when I encounter it.
- I will engage in physical activity within my possibilities and hold myself accountable without going negative.
- I will spend more time unplugging from politics and social media. I cannot fix this broken America and constantly exposing myself to every facet of its brokenness is only going to add more stress, which will worsen my condition.
- I will try to do something that moves forward the cause of my chronic illness every month: donate to a foundation, support a political candidate who is for universal health care, bring visibility to my illness through writing.
- I will support other people who are writing about chronic illness and amplify their voices on social media.
- I will communicate to colleagues what I need from them, especially when it comes to the work schedule. I will get ADA accommodations if possible.
- I won’t compare my productivity to that of those who are able-bodied.
- And I won’t compare myself to those who also have chronic illnesses but appear more productive. Their goal posts are not my goal posts. Plus, I don’t know what they’re actually going through. Everyone can look productive on social media.
- I will not feel obligated to call out every ableist comment or educate every co-worker, acquaintance and rando on the internet. It’s 2018. People can Google.
- I will keep a gratitude journal. No matter how shitty things get, I still gotta find my joy.
- I will also keep a list of things to look forward to: vacations, dinners, visits from family and friends.
- I will allow myself to make future plans that might seem impossible right now: moving, taking a long trip, signing on to a long term project. And I will remember that plans can be rescheduled and otherwise adapted to my needs.
- I will find strength and solidarity with others living with chronic illness, especially those different from my own. We are stronger united.
- I will try loving my body, even if my disease makes it hard to do so.
- I will take the liberty to break resolutions when my circumstances change and I will not feel bad about it.
About the authors:
Maggie Levantovskaya is a writer, teacher and editor, based in the Bay Area. You can read more of her work on http://www.maggielevantovskaya.com
Verena Hutter is a writer, blogger, editor and sometimes Saturday school teacher in Portland, OR.