Having the right doctor or specialist makes a huge difference when you’re managing a chronic illness. But one person can’t accomplish all the work required as you figure out what a new diagnosis means. You also need relational support and educational resources or tools that will help you navigate your ongoing role as patient.
Many organizations, institutes, nonprofits and advocacy groups offer resources to help. In fact, much of the research and resources used as background for the feature section of CVC’s fall Community magazine—on going back to the basics of chronic illness—came from a range of useful guides for living with chronic illness from such organizations. While they won’t each apply to your specific diagnosis, anyone on a chronic illness journey can still find value within their pages.
So if Community left you feeling empowered to seek more knowledge, see if one of these four guides may be next as you navigate the medical world.
The Livestrong Guidebook is written for people with a cancer diagnosis. But the amount of information relevant to chronic illness won’t disappoint you. You’ll find a chapter-by-chapter guide starting from diagnosis and ending with advanced care planning. The book includes checklists and reputable resources for every topic and you’ll hear from researchers, doctors and patients.
To give you a sense of what’s inside, these are some of the chapters:
- Developing your support system.
- Choosing your health care team.
- Day-to-day concerns (relationships, home health, employment, finances, legal documents, etc.).
GARD’s guide for patients, families and friends
The Genetic and Rare Disease (GARD) information center offers a web-based guide full of information for people with rare disease. Because it’s part of the National Institutes of Health, it’s probably the most scientifically robust resource we found. It helps guide patients particularly toward the kind of specialized care or genetic questions distinct to people with rare diseases. But plenty of information could be useful to anyone living with chronic illness.
The guide includes these sections (and more):
Global Genes Rare Toolkits
Global Genes offers dozens of toolkits geared toward people with a rare disease diagnosis. More of these are related to pediatric care, but once again, if you have a chronic illness, you’ll find plenty to relate to within the guides. These are downloadable and often contain interactive elements. Some are based on webcasts you can view, recorded from completed webinars.
Here are some that might be useful:
- Support groups.
- Building a care notebook.
- Informed consent: Important treatment decisions.
- How to discuss genetic disease with your loved ones.
- Navigating health insurance.
Planning for Long-Term Care
AARP put together this resource guide for planning in advance for the kind of long-term care adjustments most people need to make eventually, but that are especially relevant to those with chronic illness. It includes sections to guide you through considerations for your health, finances, wishes and more. It also includes a long-term care worksheet.
While you’re there, you might also find one of their many other tools useful. Find them all here.
As always, don’t forget to check with the patient organization related to your diagnosis, if one exists. They may have a guide of their own, which likely contains some disease-specific help general guides don’t cover.
For example, here’s one from Pulmonary Hypertension Association.
If you can’t find one on your organization’s website, try contacting it directly. Many also have printed materials they can send in the mail.