When I was diagnosed with lupus six years ago, I did not know anyone else with lupus living in LA. It was a time of great change for me, as I had to make many big adjustments to my life in order to keep myself as healthy as possible. I remember feeling like no one in my social network understood what I was going through, and I began experiencing feelings of isolation. I started looking for ways to connect to other people living with lupus through chat forums, chronic illness blogs, and online support groups. It was through my online search that I found out that there was an organization in Los Angeles dedicated to providing support and assistance to people who have lupus called Lupus LA. I started going to one of the many support groups Lupus LA offers, and the benefits I’ve gained from these groups have been enormous. Many years later, I am still a regular attendee of a Lupus LA support group, and have gotten to know many people who deal with ongoing health issues like I do. I feel very fortunate to have found such a great support system here in my home city.
If you live in the LA area and are affected lupus, I encourage you to come join one of these groups. Some of the many benefits of being part of a lupus group include:
It can be very comforting just to know that you are not alone in all the ways lupus affects your life. As you and other members of the group discuss your experiences, struggles, and stories, you might find that many of your experiences and feelings are commonly shared by others. It can be powerful to find that other people are dealing with the same symptoms and emotions as you. A simple “I’ve been there, too” can make a big impact in terms of validation of what you’re going through.
Having lupus means that you may often not feel well, and you may sometimes miss out on engaging socially with other people. A group provides you with that much-needed human connection with people that truly “get it”. Regularly attending a support group can be a great way to fight the isolation that lupus inflicts. You might even find that you build personal relationships and lasting friendships through the group.
While it’s important to seek the advice of your doctor, the reality is that your doctor likely does not have lupus him/herself. There’s something to be said for getting advice from people who have experienced the same symptoms and issues as you. A lupus support group can be a great place to get guidance on the types of things your doctor can’t provide you with—such as navigating the insurance system, how to communicate your symptoms to your loved ones, or tips on how to best travel with lupus. There is so much more to living with lupus than just taking the medications your doctors prescribe. The group can help provide you with a lot of information on living a healthy lupus lifestyle.
4.) Safe Space
Many people with lupus feel judgment, anxiety, or hesitation about being honest and real in discussing their feelings and symptoms associated with lupus with their friends or family. The support group provides a safe space where you can share your experiences without facing any judgment, bias, or disbelief from the other group members. Whatever is said at the group stays with the group, so you can be free to share your true experiences knowing that whatever you disclose to the group will not be discussed elsewhere.
By Emily S. Nunez