Lupus stinks! It consumes your life. It takes over so many aspects of your life. I can tell you that when I initially got my diagnosis, I really thought I could deal with it on my own. How bad could it be to deal with being sick? I’d had colds before, the flu, and made it through just fine. Well, let me tell you something, battling lupus is nothing like any of that. I wish that were a workable comparison, but it’s like comparing apples to watermelons. HUGE difference.
When I finally realized I needed to be around people who understood what I was dealing with, who could provide comfort and information, I went on the hunt for online support groups. The reason I chose online is because, at the time, I could hardly walk and talk at the same time. My energy levels were in the garbage. Just to get across the room in my apartment would wear me out to the point of needing to sleep for several hours. So getting dressed and finding a support group of people in real life, so to speak, was out of the question.
I found a ton of groups dedicated to lupus, chronic illnesses, and various autoimmune diseases. I joined as many as I could. Then I started to slowly back out of the rooms, not doing a lot, so I could leave undetected. I saw and read so much that made me wonder if I would need extra therapy after being in some of these groups. Very early in, I knew that a lot of what I was reading was not something I wanted to be around. It wasn’t just people battling their illnesses, but there was so much more to it than that, and I felt I had enough on my plate. So I started my own group and I remained in another group where it seemed the admin was really doing her best to truly be a source of hope and help.
Eventually, she became quite active in my group and I in hers. So we did something that seemed quite natural, we decided to become admins together for both groups. As I watched one group grow, I saw some things that gave me pause and she and I would discuss how to handle them. They were the things that caused us both to back out of other groups and start our own. Together, we worked to make sure our group did not become one that made people want to run and hide.
One of our groups, called the Autoimmune Box, is for all people who suffer from autoimmune diseases and is more focused on eating well and nutrition for our ever-changing bodies. The other is a support group for lupus warriors, caregivers and loved ones. We do our best to make sure to insert as much happy into our groups as possible, and it seems to be carrying through. When she and I are not there, the group has become very good at picking up the slack and supporting one another. Every so often, our members will have a disagreement, but we jump in quickly and do not allow those situations to get out of control.
I am excited about sharing, but I will be honest, I am often guilty of being distracted. So I am happy to have a partner who is understanding and with whom I am on the same page. If you need a good support group, I hope you will consider joining one of ours. We also have a support group called Lupus Loud, and we welcome great people who are battling it out like we are.
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.