Figuring Out Where We All Fit In

I think it’s ironic how in so many situations, we can feel alone, as if we are the only ones who feel a certain way. Then, when we share those feelings with others, we learn we are not alone.

Lupus stinks, there is no doubt about it. When I share details about my journey, I often add humor. This is partly because it’s how I cope. But it’s also so that those whom I am teaching about the ins and outs of this battle aren’t left feeling heavy, and hopefully, they’ll continue to learn.

I always feel a little guilty when I have really good days, especially when I check in with other warriors who are facing ugly challenges. I know it’s not a competition, but I almost think I’m doing something wrong if I complain or if what I feel somehow doesn’t match what others are feeling.

I know this sounds foolish. I have been chasing remission since I received my diagnosis in 2016. Two years later, I was told I had remission numbers, but my body still felt awful.

Recently, I read an article by another warrior in which she expressed feeling like an imposter because she is having more time in remission and feeling good than before, and she’s not sure where she fits in. I found her perspective interesting because just having a period of good days makes me feel like I shouldn’t mention it in the lupus communities.

Earlier this year, I had my first round of infusions, and for two months, I felt recharged. As I write this, I am in the U.S. to have another round of infusions, and one of my friends said, “You’re off to get your batteries recharged!” (I hope it lasts longer than two months this time.)

I had a strange sort of guilt for having energy during that time. I still had joint pain, but I’ve had some type of pain for decades, so most pain I can deal with. What I can’t deal with are the cognitive issues, the insane fatigue, and the constant and incessant coughing that shakes my body to its core.

However, just feeling “normal” — for even a small period — was confusing for me after so many years of clearly defined symptoms.

I think we all may feel like imposters for one reason or another. We have an invisible illness, and some of us had been told for years that it was all in our heads. Many of us “don’t look sick,” so co-workers, friends, and family think we are whiners or lazy.

Then there are those who are in remission enough that they can function in society, and their lupus may appear undetected, so to speak. I sometimes envision myself gaining more endurance and doing more, then I wonder what I would write about at that point.

I was at a point a couple years ago during which I almost considered quitting writing, but for the opposite reason of feeling well. I felt bad. And I believe that we speak many of the things that happen in our lives into existence, so I wondered if I just stopped writing about lupus, would things get better?

One thing my fellow warrior and I definitely agree on is that no matter what we may feel or think, we still have lupus. And no matter our status, this is still our community. We are not imposters — we are simply at different points in our battle.

I hope that if you are dealing with a lupus diagnosis, you’ll realize that you are not alone. There is no shame in wherever your body has you in the battle. If you are in remission and feeling well, I’ll celebrate and live vicariously through you. Enjoy it, and don’t feel an ounce of guilt about it!

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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, and are intended to spark discussion about issues pertaining to lupus.