Are you living with a chronic or complex medical condition?
Unlike an acute illness, living with a chronic or complex medical condition goes on without end, and presents its own unique demands. This page is where we will gather resources from other patients, patient support organizations, researchers, and an assortment of health care providers.
We hope that you will find it useful as you think about your goals and navigate the challenges of your health journey.
Defining hope and your new normal
While this list is by no means exhaustive, below are some very common goals to consider when living with a chronic or complex medical condition:
Stay motivated and engagedBecause a chronic or complex medical condition never goes away, a common goal is to stay motivated and engaged in managing your condition and associated symptoms over the long term.
Finding a new normal
Another typical goal is each patient defining their best new normal, and through gaining an understanding of their medical condition(s)
and evolving treatment options, the patient can match their treatment approach to their own priorities. This also includes the long term management of broader life impacts, including work, finances, home life, intimacy, travel, and other activities.
Mental health check-ins
Depression and anxiety often accompany a chronic or complex medical condition, so a goal is often effectively manage the psychosocial effects of your condition.
Communication, community and support
After the initial flurry of activity at diagnosis, patients will need to determine the best way to communicate with family and friends on progress and setbacks, figuring out respite if and when required, and finding appropriate and sustainable supports. The goal is to build the right team around you.
Every journey is unique, but many of the obstacles are similar
Below are some challenges typically faced by patients with a chronic or complex medical condition:
Be empowered, own your journey
For the best outcomes, a patient with a chronic or complex medical condition needs to take ownership of their care. This includes becoming knowledgeable about their conditions, and tracking symptoms on an ongoing basis so that they can be addressed before they turn into significant problems.
Change in lifestyle
Part of the treatment of most complex and chronic conditions involves lifestyle changes, including healthier eating, not smoking, not drinking alcohol in excess, being active, managing your weight and managing your stress. These often start out as high priorities and can be challenging to keep from moving to the back burner over time.
Find what works best
Managing medications is often very important to the management of a chronic or complex condition, including taking the right doses at the right time in the right way. This has the potential to become increasingly complicated over time if new medical conditions are diagnosed, medications become less effective or new medications are prescribed.
Beyond physical health
Beware of depression and other mental health conditions. More than a third of patients with chronic and complex health conditions suffer from depression, but the incidence can vary significantly depending on the condition.
Reach out for supportChronic and complex medical conditions can wear you down over time, making it more difficult to stay motivated and engaged to do all the right things. External supports, such as family and friends, can also lose momentum. Therefore, building the right team, including not only health care providers but also peers can help you overcome this challenge over your lifetime.