Aug. 15, 2017

Sharing the Journey: Social Support

The Sharing the Journey series is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

Where do you get your social and emotional support from, and how does this support help you to better cope with lupus?

I get my social and emotional support from my boyfriend and his mother. The two of them put forth much effort to ensure that I rest, eat when and how I need to eat, and listen to me when I need someone to talk to. This helps me tremendously because I know that if something comes up I have someone that I can lean on. If I need to stay in bed all day, there is someone there that can handle the things at home. They encourage me, motivate me, and show daily how proud they are of me, and that drives me. I really do not know what I'd do without them. – Kayla B.

My family and friends are my essential people. This has always been the case. However, I have also found much needed support in "chronic friends" that I have met online. These relationships have been cultivated, and I am lucky to have met many of them in person. It is sometimes difficult to understand how people that started out as strangers have become so instrumental in helping me get through illness. However, they understand it firsthand. I even have a group text with several of them. When I found out I needed surgery, aside from my immediate family, they are the first ones I told. "Hey guys, I'm going to be titanium, too!" – Leslie R.

Finding a solid support system is so essential, but sometimes difficult to do. With a disease like lupus, most people do not understand the enormity of symptoms you go through on a daily basis because you “look normal.” I have also found that I am my own worst enemy when it comes to opening up about my symptoms and asking for help. I get tired of explaining what lupus is or fear that people will just be annoyed with the amount of complaining I could actually do. Over the years, I have found that my husband is my best support. Living with me day in and day out, and seeing what I go through, he has perspective. As my kids age, they too know when mom is not feeling good, and when they need to help out a little more. I also have a couple good friends that I am able to vent to with no limit, they offer emotional support in a way my immediate family cannot. My circle of support is small, but very crucial when times get tough, and I appreciate every one of them for lifting me up. – Roxi A.

I get my emotional support from my entire family. All of them are my support team. I also receive emotional support from my rheumatologist. She is my life saver. Their support encourages me to do my best and keep up with my daily routine, in order to prevent lupus flares. – LaTrease B.

I would definitely say my biggest emotional support is my mom. She was diagnosed with lupus before I was, so she initially taught me how to handle the disease day-to-day and warned me about things that could be dangerous triggers. She is still my rock and emotional support when the going gets tough and I really love sharing my feelings and pains with her because I know she gets it. Besides my mom, I have a close knit group of friends at school who share my Christian beliefs and are a constant source of help and encouragement. I like having friends who don't suffer from a chronic illness because they help me to look beyond my disease at other things life has to offer. They are also very sensitive to my physical well-being and will often encourage me, even when I don't want to hear it, to rest and take a break. – Becca M.

I would say that my family and friends are my support team. They are great in helping me get through tough times when I am worried about a hard situation. It is always helpful to have people you can count on when you're unsure about a situation. I am lucky to have them because I would not be able to go through this journey alone.  – Kylie K.

At this point, most of my human support comes for my spouse and places where I volunteer. A lot of the other support comes internally as I tend to be more internally guided at this time. I certainly love being around people, but am fully nourished by giving at this time. I have struggled with the medical world so much, it seems that I am primarily guided there and I have had to stay very clear with what is happening with my own body so I can report ahead of time as early as possible what’s going on with my lupus. I also have two siblings that I have strong relationships with and can get in touch with at any time and feel a totally open connection with. There are a few other essential people in my support system including a dear friend I met in the mid 80's  who I have stayed connected with even when I moved, as we have remained very close and continue to see each other often. I have also established a spiritual community here which is not a very deep one, but there are several folks I feel connected with and several who I have done some healing work with and I also do some work with homeless families through that group which is a nice connection for me.  I am also still connected with folks that I was around back in Madison where I was first diagnosed though that is not as strong a connection as it used to be. – Betsy H.


Friendships Can Help You Deal with Your Disease

When you are first diagnosed with lupus, it may be hard to maintain all your old friendships—but the ones worth keeping may become even closer. Your real friends are the ones who will offer to help you out in little ways, listen to you when you talk about your lupus, and understand when you need to stay home.

Check out Best friends: How close friendships help with coping for stories about how real people with lupus find support from their friends.