Read Aiden's story about her life with lupus and how she couldn't have gone through this experience without the help from her mom.
Caregivers, You Are Not Alone
Sharon Mack is a Health Educator for the Lupus Foundation of America’s national Office and Director of Patient Services for two Lupus Foundation of America chapters.
As a long term caregiver, my journey has been full of different experiences—both manageable and difficult. Through these experiences, one of the most valuable lessons life has taught me is to be open to learning. The learning process can be challenging, but it enables growth and self-discovery, especially when we are put to the test. With the knowledge I gained, I realized that I was more capable of being a caregiver than I could have ever imagined.
My role as Director of Patient Services for two Lupus Foundation of America chapters and as Health Educator for the Foundation’s national office has exposed me firsthand to the ongoing care demands that people with lupus—and their caregivers—face while dealing with chronic illness. While caregiving can be challenging, it is a transition we can prepare for with knowledge and specific skills, to provide the best possible care to our loved ones. For all caregivers, it is especially important to focus on:
- Communication and problem solving skills
- Organizational skills
- Self-compassion and self-care, including healthy choices and dealing with feelings
- A working knowledge of how lupus affects your loved one
- How to collaborate with health care providers
The Lupus Foundation of America has been critical in providing caregivers with an understanding of lupus, support, and most of all, hope. And this is precisely why I am excited to introduce the newest section of the Lupus Foundation of America’s Website, Caregiving: What You Need to Know. Created with input from myself, Lupus Foundation of America staff, and most importantly, reviewed extensively by a taskforce of caregivers, we have compiled information all lupus caregivers can find helpful throughout their journey. My hope is that this section will provide you with the reliable and ongoing support that is so critical when transitioning into the role of caregiver. Each person’s story is unique, but we hope you will find it helpful to read the guidance provided from “someone who has been there, too”.
When you have a shoulder to lean on, you find validation and the courage to do what needs to be done. When you have access to information, you will make informed decisions, becoming a more aware and more skilled caregiver. Caregiving demands perseverance, but also invites self-discovery. I hope you find the new caregiving content to be helpful, as well as supportive and informative.
Health advocates are part of a new profession to help patients remove barriers to the care they want and need. This emerging field helps patients by building skills and connecting them to resources so patients can participate and drive their health care experience and make the best decisions possible.