Lupus and Loneliness

Recently, I moved to the other side of the world in search of better and affordable healthcare. Selling off all of my belongings in the U.S., I knew I was preparing for a new and great adventure. I’d traveled alone before, but the longest I was away from my friends and family was a month. I will be honest: Part of the reason I felt capable of doing this alone is because, while waiting for my diagnosis, I had taken a position in a new town and really didn’t know anyone there.  I knew I had the strength to start over in a new place.

When I took the position, I was feeling great. But it was during that time that my health hit a brick wall. As my energy levels depleted and my health declined, I would stay in my apartment literally for days. These were dark times for me as I worried and wondered what was happening to my body, and to my mind struggling with the constant brain fog. I had friends who could be considered nearby (two hours up the road) but no one was there for me as frequently as I would have liked.

What many who are not battling an issue such as lupus don’t realize is that even when you are surrounded by people, this disease can make you very lonely. Not many people understand truly what you are experiencing. They see you on good days and figure you’re cured; on bad days they figure you look well so it must be in your head. You are constantly explaining either feeling bad or feeling good, and when people don’t get it, you feel quite lonely. After a while, you get tired of explaining yourself and, for many of us, we just close ourselves away.

I tend to proclaim my lupus, because I know I am bringing awareness — but even that does not stop the true feelings of loneliness. I just spent my first Christmas away from everyone I know and love in a new country with different customs. The loneliness was almost overwhelming, but I’ve come to the understanding that we are all technically alone when we are battling troubling times in our lives. This weird sense of belonging helped me get on with my holiday. I know these feelings will emerge again, but learning to cope with the changes in my life, both physically and emotionally, are part of the battle.  They say that what doesn’t kill you will make you stronger, and if you are battling like I am, you’re one tough cookie and can handle what life tosses at you. The lonely feelings will pass if you acknowledge them for what they are, and realize that it’s natural to feel this way. As my mom always reminds me, this too shall pass.

Please stay encouraged, don’t give up and don’t let these feelings consume you. As I am forging new friendships, learning how to cope in a new culture and accepting the fact that I don’t have anyone here that I can truly rely on, the feelings can really get the best of you. But if you are surrounded by loved ones, keep in mind that they don’t have to fully understand what is happening to you to be the people you know you can count on and help with the loneliness.  Having a video chat with my kids helped push me past the worst of the lonely feelings. While I couldn’t hug them, I still knew that the love they have for me matters. They may not fully get what’s happening to me, but I am not alone and neither are you.

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.