“One thing I know now is that I am not illness. While my struggle with illness never
defines me, it shapes my values, molds my perspectives and expands
my capacity for gratitude. I am not illness, but I will always be its student.”
Tiffany Christensen, two time double lung transplant recipient
Patient Advocacy Director, Project Compassion
If you are living with a serious illness, dealing with the unknown may be difficult. You may experience physical changes, strong emotions and spiritual questions. Your day to day life may change. Above all, your perspective on life and what matters most may change significantly.
At Project Compassion, we are here to offer you resources and support. We hope this orientation page will help you get started. This page will help you:
1. Access Resources
Access to resources becomes significant when you’re living with illness:
- Check the Resources section to find information, organizations and websites on illness and caregiving
- Be sure to read “Finding and Evaluating Resources on the Internet,” an article at the beginning of the Resource guide.
- See Publications and Educational Events for further resources on illness, caregiving, end of life issues and grief.
2. Experience Support
When you live with illness, it’s important to have ongoing support from others. Without positive, helpful support, you may feel alone or become burned out.
Here are some steps you can take to reach out for support:
- Encourage understanding. Often family members, friends and neighbors and co-workers don’t know what to say or do. Ask your family and friends to learn more about living with illness and caregiving. Suggest Project Compassion’s website as a starting place.
- Open yourself to receiving support. Many people worry about “becoming a burden.” However, many family caregivers view offering care as an honor. Give them that opportunity to care. Some family caregivers do become over-extended and stressed, so encourage them to seek support from others. Remember, when you remain open to the idea of support for your caregivers, you improve everyone’s quality of life.
- Seek out online support. Use websites such as www.carepages.com or others to communicate with family, friends and others living with illness. See the resources section of the website for a complete list.
- Tell your friends about Lotsa Helping Hands. Have your friends create an online community to coordinate support. At Project Compassion, we partner with Lotsa Helping Hands to provide this free service. Click here to learn how it works:
Send this link to your friends to help them organize.
- Request a Support Team. Support teams are coordinated groups of friends or neighbors who can offer you practical, emotional, spiritual and quality of life support while you’re living with illness and caregiving.
- If you are in Durham, Orange or Chatham county in NC, Project Compassion will organize a Support Team for you free of charge. To learn more, click here.
- African Americans living in Durham, Orange, Chatham or Wake counties can also tap into free support through Circles of Care. To learn more, click here.
- If you are outside of Durham, Orange and Chatham counties, NC, you can purchase Project Compassion’s Support Team Guidebook. We recommend that you share the guide with a friend who has leadership skills or with an organization, such as a faith community, that may be able to help. Ask them to review the materials and take the lead on organizing a team. If they would like to learn more, refer them to Support Team Development.
3. Learn Advocacy Skills
When you live with illness, advocating for yourself has never been more important. Unfortunately, being a patient often requires you to be at your best when you may feel you are at your worst. By learning about patient advocacy, you will:
- understand your choices and make them clearly known
- help prevent potential medical errors
- get the best care available to you
Here are resources available to help you improve your patient advocacy skills:
4. Plan Ahead
Whether or not you are living with a serious illness, it’s important to plan ahead. Half of all Americans will reach a time when they are unable to speak for themselves to make important health care decisions due to illness or accident.
5. Find Ways to Give Back
Part of living with illness often includes a strong desire to give back. While everyone’s capacity to give is different, we encourage you to find the way that works best for you. Here are some ideas:
- Say “thank you.” Living with illness takes time and energy. Sometimes it’s easy to forget to express appreciation. Taking the time to say “thank you” to caregivers and the important people in your life is an easy and meaningful way to give back.
- Give in ways that fit with things you love to do. For example, if you used to enjoy baking or woodworking and you are still able to do it, you may enjoy using your gifts to create gifts. If you are not still able, you may enjoy teaching someone else your favorite craft or activity.
- Make a donation to support others living with illness. By making a donation to Project Compassion, you ensure that others living with illness will have access to important resources and services. To learn more about the impact of a donation, click here.
We hope these resources and ideas will help you on your journey with illness. We encourage you to explore our website fully, subscribe to our e-letter and tell your friends about our resources. We look forward to having you as part of our Project Compassion community!