Battling the Loneliness Brought on by Lupus

Learning a new skill is not easy. But you have an incentive to practice if it’s something you enjoy or find to be beneficial.

I’m working on coping with my depression. I’ve discovered that if I want to be mentally well, I must learn how to handle this new lupus tagalong, which comes with additional challenges I have zero experience with. I haven’t previously experienced loneliness, and it’s a little overwhelming.

I realized that my isolation was self-imposed. To remedy my situation, I decided to try to go out and interact with more people. I accepted an invitation to see a movie. I prepared for the outing by packing what I call my “adult toddler bag.” It contains a sweater, fleece blanket, headwrap — I am bald, thanks lupus — and a cushion to sit on because I am very thin, which makes sitting on hard chairs uncomfortable.

In the car, I wrapped myself in a blanket. However, before we arrived at the theater, I was shivering, and my fingers felt frostbitten because of Raynaud’s. Having the air-conditioning on in the car was an issue, but the weather is tropical where I live, so it’s unreasonable to expect people not to use it. We arrived at the theater, and I knew that I wouldn’t be able to sit comfortably. Then, as if missing the movie wasn’t bad enough, on the way to another location to engage in an alternative activity where I could be warm, we had to pull to the side of the road so that I could lose my lunch.

We were at the roadside for so long that a box was pulled from the trunk for me to sit on. I found this gesture to be super embarrassing. Yes, I know that I’m sharing it with you here. But I realize that readers can relate to my challenges, and I feel that this is a safe space to share the nonsense that is lupus.

Back at the roadside, I felt sad, angry, and embarrassed, and my first thought was, “This is why I stay by myself.” I felt as if I’d ruined the evening.

After I was dropped off, I sent my new friend a message saying that I appreciated their trying to comfort me. I apologized for what had occurred. I meditated to work through the experience and let it go. I can’t change what happened, but I was determined to keep trying. I could give in to my feelings and continue to be alone. However, that approach is not serving me well, either. I need to strike a balance. I have chosen isolation in many situations because of the unpredictable nature of this disease.

Earlier that day, I had been feeling fine. But when I received a message telling me that I would be picked up in five minutes, I threw up in my hands. I know how difficult it is to make plans, and how disappointing it is to look forward to something, and then to have to cancel at the last minute. I think that many of us stay out for others despite feeling unwell so that we don’t feel like a burden or ruin the fun.

As the evening came to an exhausting end, I gave myself a pep talk. I told myself that how my body behaves is not my fault and that because I am vocal about my battle, anyone who chooses to spend time with me understands the risks. Please don’t give up trying. Make those connections. I will be right alongside you trying, too. We can do this! Are you with me?

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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.