How To Nurture Yourself When Living With A Chronic Health Condition
Honor And Care For Your Body And Mind
Since 2012, my body has been invaded by hives, leaving no angle or appendage unaffected. From my scalp to my ankles, red misshapen marks appear, gathering in clusters, emerging from my skin like bubbles, and itching intensely. I usually want to scream or break something but, out of respect for my neighbors, there is usually nowhere to put the anger.
I fear these agitators will arrive at any social gathering I go to (they have). I feared they’d arrive on my wedding day (they didn’t). Whether I’m stressed or in bliss, they emerge. Whether I do everything the same or nothing. And how long they last is up to them. My mental health, self-esteem, and social & sex lives have all been affected by the hives, and I don’t feel like myself when I have them.
I’ve seen allergists, immunologists, dermatologists, and holistic doctors—all tests have come back negative and no triggers have been found—and have been prescribed everything from Pepcid to Prednisone. I’ve tried food elimination diets, juice cleanses, acupuncture, B-12 shots, air purifiers, and have gradually made my daily products more natural. I’m sure these choices have all helped me, but not in the long-term way I’ve been looking for.
Chronic conditions, their treatments, and the ways in which they impact their affected humans are so wildly varied that there is no way to provide an all-encompassing analysis or antidote. What I’m prescribing instead—pun intended—is encouragement, because that can be universal. If you are also someone living with a chronic condition, here are a few ways to honor and care for your body and mind.
Find Your Community (& Pay It Forward)
After a dozenth doctor’s appointment-gone-wrong, I took to Instagram, searched the hashtag #chronichives, and found a woman who’d written a detailed blog post that might as well have been my own journal entry. But she had significantly reduced her flare-ups. I sent her a message and, to my surprise, she wrote me back the very next day and sent nine audio messages, too. (Nine!) She left the lines of communication open, saying that I could contact her if I had questions or simply when I needed a sounding board.
This kind of eager, willing, and personalized attention was what I’d been missing from doctors, and to receive it from a stranger made me feel seen and like I wasn’t alone. Her words felt warm and unequivocal: “I’m here for you. And I know how hard it can be and that nobody else understands what you’re going through.” And they encouraged me to offer the same for others with similar experiences who might be seeking clarity and community.
Confiding in those who don’t share the same concerns can be a challenge. Sometimes you’re asymptomatic and friends and family can’t soothe what they can’t see. And sometimes you start to feel self-conscious about sounding like a broken record.
To combat this, look for online or IRL communities and support groups where you’ll be able to express yourself and receive encouragement. There, you may even meet people whose stories provide you greater perspective on your own experience. Then, when you feel up to it, offer your learnings to others in need. Even outside of the chronically diagnosed community, seek out opportunities to be altruistic; volunteering has been shown to counteract feelings of stress and provide a sense of purpose—both of which are often and easily threatened when suffering from a chronic condition.
Honor Your Abilities (& Practice Gratitude)
When I’m in the throes of a flare-up, it is impossible to focus on anything else. Not just because the hives can be mentally draining—the wondering of “why?” is endless and fruitless—but because their physical nature (i.e. the itchiness) can prevent me from peaceful sleep or productive work, and even the way they look can make me want to retreat from the outside world, delaying all personal errands.
In those moments, I’ve stopped trying to simply “stay positive.” This suggestion is often impractical despite its good intentions. Instead, we deserve the right to sit in our truths and feel our feels. I’ve learned that it is only after I’m out of the hives’ grasp that I can begin to practice gratitude. It’s then that I can think about all the things the hives are not.
When in the mindset to do so, ponder (or even write down) all the things you’re still able to do despite your condition. What are the areas of your life that it does not affect? When is it more discomforting than truly debilitating? What, if anything, brings you relief (even if brief)? And, most importantly, what are you doing in the moments when it’s the furthest thing from your mind? Do those things more often.
Licensed psychologist and professor Seth J. Gillihan, PhD. writes that many chronic illnesses have unpredictable courses, resulting in some days being much better or worse than others. But he encourages, “As much as you can, appreciate these periods of respite.” Recalling these instances can help serve as a reminder that your condition doesn’t always control you. It can affirm that you do still experience encounters with joy.
Say Yes (And No)
The stress of a chronic condition can often be exacerbated by the impact it has on your social life. You can feel like a burden to those who take care of you, a bother to those you express your frustrations to, and embarrassed if its symptoms prevent you from fulfilling plans. Those feelings can then compound, leaving you to want to retreat from friends and family altogether and subsequently deny them when they turn to offer help.
Instead, say yes to assistance. Not only do you get to feel supported, but as Toni Bernhard writes in her book, “How to Live Well With Chronic Pain and Illness,” “Allowing [others] to help when you’re struggling with your health makes them feel less helpless in the face of the new challenge in your life.”
Conversely, if and when you feel you’re pushing yourself, either mentally or physically, past the point of comfort to appease others, learn to say no. They will understand.
“Protect your precious time and energy,” says life coach Dana Humphrey. “When you do this, you slow down life in a wonderful way. Creating boundaries and learning to say no also helps to bring your goals into sharper focus. You will feel happier and more productive.”
Practice (A Different Kind Of) Self-Care
Ever since the term “self-care” entered our vernacular, it’s grown to encompass everything from meditating daily to treating yourself to a luxurious latte. As much of a necessity as it is for all people, it can be especially crucial for those with chronic conditions. A study shows that its diagnosed participants described self-care as “transformational in terms of feelings about their selves and reclaiming a sense of order.”
But contrary to popular belief, the study’s findings enforce that self-care is less an act of doing and more an act of “being” and “becoming.” Its participants revealed self-care to be a “process of adaptation” to learning about oneself and about ways to live well with chronic illness. They found that shifting their perspectives had a number of personal benefits, including a growing capacity for compassion and imperfection; newfound feelings of confidence and pride toward their resilience; and a greater desire to appreciate the good and overlook the trivial.
I can often feel like I’ve been dealt an unlucky hand and, therefore, deserve to indulge in whatever immediate gratification I see fit. But fulfilling those impulses never improves my emotional resilience—which is what’s truly of utmost importance. So, yes, on the days you need it most, eat the chocolate and become one with your couch. But be sure to embrace adapting to the New You too; it’s so much more rewarding than tirelessly fighting against it.
Get Back to the Basics
Jamie Bacharach, a licensed medical acupuncturist, says, “One of the most effective ways to dull the effects of a chronic condition is to build up your body and strength in other areas which can help you to compensate.” For example, if a chronic condition is adversely affecting your lower body, Bacharach suggests building your upper body strength. Or, if you suffer from chronic sleep disorders, improve your breathwork.
The unrelenting nature of a chronic condition can make you feel like nothing matters. You may think, since it refuses to let up, what’s the point of doing anything at all? Of getting out of bed? Of making plans? But even inaction has its effects. So, if all the above sounds too taxing, don’t worry: sticking to the basics won’t be wasteful either. As applies to all people, maintaining a healthy diet, exercise regimen, hygienic habit, and sleep schedule has great benefits on our immune systems, energy levels, mood, and cognitive health, all of which are challenged by chronic conditions, making them all the more essential for us to uphold.
Ultimately, Bacharach encourages the chronically diagnosed to stay persistent in trying to improve their conditions. “Regardless of how long someone has been suffering, there are always new treatments and pain- or discomfort-relieving medicines being developed to help those in need,” she says. “Someone who has enough hope to continue to try to find solutions will inevitably function more ably than someone who has given up.”
Living with a chronic condition can be exhausting, so I am unafraid to admit that some of this advice I’ve yet to take and some I frequently falter on. The key to enduring the day-to-day is to forgive ourselves in the moments we can’t quite garner the energy to rise above it all. We’ve been granted a unique life and, thus, so are our reactions to it. The only thing that’s certain is that surrendering entirely will never do us any better. So why not try to live as best we can?
Danielle Cheesman is the Partnerships Lead at The Good Trade. Though born and raised in New Jersey, she’s now based in Los Angeles where you can find her taking pictures, making playlists, or cuddling her pup. Say hi on Instagram!