I believe there is a time and place for everything, but to be honest, sometimes battling lupus leaves me wondering what time and place I fit into. Many of us with lupus are young women who no longer can work outside of the home. For those of us with young families, there often are feelings of guilt and helplessness. It can be difficult to lead a family when you don’t have the energy to do things with them, or attend events in which they may be taking part.
My children are adults, so I have fewer family-oriented things to take up my time. I wander through life asking, “What now?” No work to go to, no kids to tend to – where does this leave someone like me? Work was a place not only where I could go and feel useful, but also allowed for social interaction.
Some of us are bedridden and feel isolated because there are not many who understand what we are dealing with. Sometimes feeling misunderstood can cause us to become even more disengaged with those around us. That is not because we don’t want to be around others, but because we start to see them looking for other places to be. So, we run from them to save face because we recognize they are in retreat mode. When you spend the vast majority of your time at home or at the doctors, what you have to talk about becomes limited. Often, healthy people can’t relate this experience, and may not want to hear about it.
Battling lupus is hard enough, but adding feelings of loneliness can be very difficult. I push myself to go out at least once a week. I try to interact in a social manner, even if it leaves me feeling a bit fatigued. I need to connect with other people for my sanity, and I need to be around people who are not in the same boat as me.
I have an online business, so I host a weekly group for women who also have online businesses. This helps me short-circuit some of the lonely feelings. It also helps keep me from feeling anger, as I’ve noticed that the more time I spend alone, the angrier I feel. I am not sure why, but I do.
There are days when I still question what I’m doing, why am I doing it, and how I can feel vital to my community? I spend so much time online, but I have come to realize there is nothing quite like interacting with a real person. A conversation where you are looking someone in the eye and hearing their laughter is so much more fulfilling than reading “LOL” on a screen.
Lupus is not the easiest thing to deal with physically, and it also does a number on your spiritually and emotional health. I am fighting on more fronts than most realize, but I am doing my best not to allow lupus a foothold into much. Going out can take some serious determination on my part; I am starting to need to take the weekends to recover from my outings. To me, it is worth it because if I allow lupus to keep me in, I will become an angry recluse, and this is the direct opposite of my natural personality.
I just refuse to give up, or give in to feeling helpless and hopeless.
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.