LupusLine: Helping Lupus Patients One Phone Call at a Time

Being diagnosed with a chronic disorder like lupus is stressful.  Many patients will seek out resources to help them cope with the disease and the changes in their lifestyle.  For the most part, these patients - and at times their families - are seeking education and support. 

One resource has been around for 29 years and has proven time and time again to be a valuable tool for lupus patients across the U.S., and even from around the world. LupusLine is a telephone service that offers a free resource to lupus patients. The service that is run out of New York City’s Hospital for Special Surgery by a team of volunteers, averages as many as 100 calls a month.

The troubling effects of lupus

Lupus affects an estimated 5 million people worldwide. The disease causes significant debilitating symptoms that range from pain, extreme fatigue, hair loss, cognitive issues, physical impairments and skin rashes. Many patients quickly learn that having a disorder such as lupus means that almost every aspect of their life is affected by the disease. 

Due to lack of understanding, education and overall awareness of the disease and how it can impact a person, patients who suffer from lupus often find themselves isolated from the real world. This makes it much harder for the patient to learn how to properly cope with their disorder. Peer counseling and the opportunity to chat with someone who truly understands the disease and its effects can go a long way in helping patients deal with their disease and keep other issues from cropping up. 

Depression and anxiety in the face of chronic disease

In fact, one of the biggest side effects that comes along with lupus is clinical depression.  Battling a chronic illness can take a serious toll on a person’s well-being, especially if that person doesn’t have the right education about the disease or the proper support system put in place. Depression can also be a side effect from the medication that is prescribed to help deal with the many effects of lupus - for example, the steroid prednisone, which is known for helping with inflammation, can also have a significant effect on a person’s emotional state.

If, after receiving a diagnosis, the following symptoms and/or feelings begin to appear, then it’s a pretty good indication that depression is also playing a role in the lupus journey.

• Lowered self-esteem
• Losing interest in activities or things that used to bring joy
• Not being able to concentrate
• Poor sleep - either sleeping too much or not enough
• Feelings of irritability, anxiety, sadness or hopelessness
• Weight loss, weight gain, and/or significant changes in appetite