According to the National Health Council, an advocacy group for patients living with chronic illnesses, approximately 133 million Americans have at least one chronic health condition. Out of this number, about 40 million are limited in their usual activities by their illness.
That’s a surprisingly large share of the American population. If you or a loved one have recently received an unwelcome and possibly life-changing diagnosis, it’s also a reminder that you’re not alone.
The numbers make clear that it’s possible to live with a chronic illness, from musculoskeletal conditions that cause chronic pain or limit mobility to systemic ailments like autoimmune disease and cancer. But many patients, particularly those whose illnesses come with a grim or uncertain prognosis, aren’t sure that living well with chronic illness is a reasonable goal.
It is, as well it should be. These six time-tested strategies could help you live better with chronic illness while managing your condition more effectively.
1. Truly Understand What You’re Up Against
Knowledge is a crucial ally in your crusade to live well with a chronic condition.
Your medical provider or care team can provide you with actionable information about your condition. Don’t hesitate to ask questions of them, even if you’re not sure you want to hear the answers.
That said, good doctors and nurses know when to say “I don’t know.” If your condition is rare or atypical in its presentation, you might hear that response more than you’d like.
Using reputable third-party resources to research your condition and treatment options is fine, up to a point. Stick with resources that are beyond reproach, like the Mayo Clinic’s health information portal and peer-reviewed journal articles (which aren’t as scary to read as you might think).
2. Find A Remote Care Solution
Any chronic illness that requires ongoing management has the potential to overwhelm patients. Likewise, any chronic illness is a potential threat to patients’ quality of life. Patient management systems work to tackle both of these issues head-on.
For example, systems like Navigating Cancer enable personalized, patient-centered cancer care with a value-based framework. Navigating Cancer’s patient portal empowers patients to take ownership of their own care—organizing records, managing communication with providers, and consuming professional and personal support.
Find a patient management system that offers a patient-first model. Having control over your care will make you feel empowered and more knowledgeable about your condition.
3. Keep a Daily Diary
Chronic illness is a journey, one that for many patients has no definite destination. Perhaps the best way to make sense of where you’ve been, take stock of where you are, and look ahead to where you’re going on this journey is to keep a daily diary.
Not much of a writer? Don’t have the time or energy to sit down and pour out your thoughts on the page? Keep a digital video diary, perhaps using a private social media account or file-sharing service that’s accessible only to your closest friends and family members. All that matters is that you keep a record of your ordeal.
4. Do That Thing You’ve Always Wanted to Do
It’s tempting to see a life-altering diagnosis as an end of sorts, not a new beginning. But you should resist that urge with all your might.
Instead, reframe your chronic illness as an opportunity to do something you’ve always wanted to do. This thing doesn’t have to be a big, grand gesture like a “bucket list” trip to some far-flung corner of the world, although no one would fault you for that either. It can be creative (self-publishing the poetry you’ve written over the years but haven’t had the confidence to share) or deeply personal (connecting with an old friend or family member with whom you’ve had a falling out) or spiritual (immersing yourself in a meditation practice).
But it should be undeniably “you.”
5. Learn to Accept New Limitations, If You Must (And Turn to a Therapist for Guidance)
Your chronic illness diagnosis might bring temporary or permanent limitations, restrictions, guardrails. These might be dietary, physical, work- or activity-related, or something else entirely.
Ultimately, you may need to learn to accept these limitations. You may need to reconceptualize your self-worth around what you can do now, not what you once did. This is especially important for patients unable to work due to their conditions.
This sort of adjustment can take time. And it may require professional help; don’t feel bad if this turns out to be the case for you. The American Psychological Association recommends turning to your state psychological association to find capable, licensed therapists specializing in the type of care you seek. If you don’t find what you’re looking for there, consider a digital therapy app like Talkspace, which connects patients with providers across state lines and offers more flexible communication options.
6. Find Others Who Know What You’re Going Through
Finally, seek out support on your own terms.
This is easier than ever thanks to resources like Meetup, a digital organizing platform for like-minded individuals looking to get together in the real world. Platforms like Meetup are better-targeted and less “noisy” than interest groups or lists on social media sites like Facebook and Twitter. This means they’re better at doing what their users want: fostering camaraderie and providing vital social and emotional support during their members’ chronic illness journeys.
These communities may be fully digital or hybrid (a mix of digital and real-world interaction). Choose whichever type works for you.
Here’s to Making the Most of Every Day
Coming to terms with a life-altering diagnosis is a journey. Every patient experiences that journey differently, influenced by the nature of the diagnosis itself, their lived experiences to date, and numerous other factors specific to their place and time.
At least one thing unites all patients living with chronic conditions, however: the freedom to choose to make the most of every day they’ve been given, whatever their number and quality. Patients can live fulfilling lives after receiving the news, and indeed, many resolves to live post-diagnosis lives with greater purpose and clarity than before.
These six strategies can help you cope with the new reality of your chronic illness (or a loved one’s, if you’re reading in their stead). They can also help you find meaning, purpose, and joy in the everyday. And they can ensure your illness isn’t an obstacle to changing the lives of those around you for the better.