Questioning authority figures like doctors may feel verboten, but it’s crucial to find the right doctor to partner with you when you have a long-lasting condition. Since my illnesses are ongoing, I treat my healthcare provider search like dating—I play for keeps, and I keep it real about my needs, priorities, and boundaries. Once, I caught backlash from a doctor after I transferred my case to his female partner. We had a disagreement after he made some condescending comments and discounted my feedback about my gluten intolerance. He said there was a slim chance that I was allergic to gluten because I wasn’t Northern European, like most Celiacs, even though I told him that I had serious reactions every time I ate it.
Later, it was determined that I was allergic to gluten, milk, and other tasty things after my labs were completed. I also learned via DNA testing that, even though I am African American, my next highest percentage of ancestry is Norwegian and Swedish. I guess he never learned the old adage: You can’t judge a book by its cover. Go figure.
Help your loved ones help you.
It’s challenging to deal with chronic illnesses, so it’s no surprise that they can trigger depression and/or anxiety. Make sure you’re communicating with the people you love about how you need to be supported. Let them know what comments and resources are helpful, and which ones are not, e.g., “It is helpful when you offer to drive me to my lab appointment. It is not helpful when you come over and tell me I look tired or have gained weight.” It might feel weird or aggressive, but this is an act of love: Gentle boundary setting will make things easier in the long run.
If you need a trusted friend to email you notes after school, don’t be afraid to ask. If you’re feeling like you’re missing out, dispel your FOMO by reminding yourself that “there is always more fun to be had, and ask your friends to Skype or FaceTime you if they are somewhere fun while you’re sick. If you still long to be out with your crew, remember that you now have downtime for reality TV binges, video game playing, napping, and day-long pajama wearing—all arguably just as good.
After I threw up all over my dress in Times Square and walked 40 blocks to the ER because no cab would pick me up, I realized that shame about the uncontrollable bodily functions that come with some chronic illnesses is futile. @#S% literally and figuratively happens when you have certain illnesses. I won’t gross you out too much, but I used to have an app that told me where all of the bathrooms were in New York City when I had severe gastritis during a flare-up a few years ago. Temporary embarrassment may feel like it will haunt you forever, but people are typically so self-absorbed that they will forget about it and be on to something new as quickly as you can say “Kanye and Kim.”
Self-care is your birthright.
Managing chronic illness is no easy feat, and every day you live your life, you’re kicking ass. I give you permission to stop apologizing for taking care of yourself. If you need to sleep, shut those peepers and start dreaming. If you need to turn off your phone so you can rest, do it.
While it might not always feel this way, you can trust your body and yourself. Self-care breeds results, even if they are small. While it might not provide you an end-all-be-all cure, pampering yourself with a bubble bath followed by a Netflix marathon and chicken soup feels good. Any activities that limit your stress are helpful and welcome, no matter what illness you’re living with. If you sometimes find it hard to get into the “quiet and calm” zone, download meditations and affirmations for chronic illnesses from iTunes. Belleruth Naparstek’s guided meditations for people with living with illnesses have soothed me during countless flare-ups.
While you may wake up many days feeling like you can’t bear to move, remember that every step you’re taking is a triumph. It’s challenging to manage your schedule, tackle your to-do list, and embark on your daily commute when your body hurts. That’s why it’s important to treat yourself to some pampering every day. It doesn’t have to be extravagant, but even small things, like taking time to breathe, make a significant impact. Here are a few breathing exercises I use on a regular basis.
I congratulate myself when getting out of bed hurts, and I reward myself with my morning ritual, which entails hot lemon water, meditation, zero phone time, and a lavender eye mask. While this practice is small, it helps me ground myself in a sense of luxury, no matter how crappy I’m feeling on a given day. Greeting the morning with a comforting routine helps set the tone for the rest of your day, and most of all it sends a message to your body that you’re dedicated to feeling good on your own terms.
Chronic illness doesn’t define you.
A friend with a serious illness once told me that she didn’t like telling people about her condition because she didn’t want to be defined by it. She asked, “Who was I to you yesterday? Was I your friend, and someone who makes you laugh? That is who I am, not someone who happens to have cancer.”
This conversation tugged at my heart—and reminded me that I am also not defined by sickness as well. You are not your illness, even if it might feel that way. You are you, and while your illness is a part of that, it doesn’t make you any less awesome. ♦