Can substantial support, or lack of it, affect outcomes for a person living with chronic illness? Simply put, yes. Study after study is showing that support has a direct impact on disease outcomes for patients.
After learning how important support was early on after diagnosis, it became a health topic passion area for me. Most recently, I had the opportunity to speak at an empowerment seminar hosted by the Lupus Foundation of Pennsylvania and support was a hot topic of conversation. And so, we dove into resources that can offer someone support and how this can positively influence overall health and outcomes.
The first area I tackled was regarding our physicians or medical care teams. While our doctors are a crucial part of our disease management and treatment, we have to realize that the support we receive from medical personnel is limited. First, a recent Medscape physician compensation report shows that physicians spend an average of 13-16 minutes with their patients. While we can have some of our questions answered in that time frame, it is impossible to get all of the information and support we need from just a 13-16 minute interaction; it must come from other outside sources.
Family members are typically the greatest source of support for most people who live with chronic illness, though this is not always the case. Family members can show support in a variety of ways, including transporting us to doctor appointments, cooking us food when we are not feeling well, running errands on our behalf, helping us manage our medication schedule, assisting us with activities of daily living, etc.
A recent study from the California Healthcare Foundation, “Sharing the Care: The Role of Family in Chronic Illness” highlighted the positive outcomes seen when someone with chronic illness is supported by his or her family. Here were a few that stood out:
- Increased family support is linked to less inflammation and better joint function for people with arthritis.
- Family support is linked to better glycemic control for people with diabetes, and fewer cardiac events for people with heart issues.
- Higher levels of family support are linked to decreased patient depressive symptoms.
- Higher levels of family support are linked to increase patient self-efficacy and better self-management behaviors.
- Support from family also is believed to lower stress hormone levels in patients with chronic illness.
While this is just one of many studies that speak to the benefits of family help when dealing with long-term health problems, what happens when a patient isn’t supported by his or her family? Where can he or she turn?
Here are a few options for additional support if you find yourself in this situation:
Lupus online support groups: While some organizations such as the Lupus Foundation of America have in-person support groups, there also are online support groups available – perfect for days you are not feeling well but want to reach out to someone. To start, find out more about the Molly’s Fund group or LFA’s online support group.
Online psychological support: One thing that has helped me deal with feelings of anxiety from having a chronic illness was seeing a psychologist for a season. He taught me numerous coping strategies and I saw a substantial improvement over time. It was difficult on days I was in a flare to leave the house. Today, luckily, there are amazing websites, like Talkspace and BetterHelp, that offer online counseling from a licensed, professional therapist with whom you can speak when you need help. I tried Talkspace when it first came out and was quite impressed with the process and advice from my psychologist it matched to me.
Online chat communities: Sometimes the best aid you can receive is speaking to another person living with the same disease. This is part of the reason I started LupusChick.com years ago – I wanted people to have the ability to ask questions and learn about real-life experiences from others who had lupus.
Suicide hotline: Depression and thoughts of suicide can occur for some people who are dealing with a chronic illness. If you ever have these thoughts, please call the suicide prevention lifeline. It is available 24/7, and can offer amazing support in a time of crisis – (800) 273-8255, or visit the National Suicide Prevention Lifeline.
What other support options have you found that might help someone else living with lupus? We would love for you to share them in the comments below!
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.