A woman lies on the couch, covered in a blanket and watching something playing on her phone.

Would I Be Someone Different Without Lupus?

Do you ever feel like lupus is chiseling away at who you are? One chip at a time – getting closer to your core with each strike? Pieces falling away with each passing year that you don’t feel better? For a long time, I’ve felt resentful towards my illnesses because of what they’ve stolen from me, but I’m now grappling with the fact that they’ve stolen so much more than time.

Lupus has carved out a chunk of my life

I’ve always counted the hours lost due to lupus. Adding up the days, like time in a shared employee sick bank – doing the math to figure out how many weeks and months that I’ve spent in bed when I didn’t want to. I’ve written a lot about how much I struggle to endure these ongoing hardships from lupus.

It's not just time; I’m also quick to note the opportunities I’ve lost. Not just financially or career-wise, but the things that matter to my kids. I missed my kids first haircuts. A graduation ceremony, a winter musical. I missed the first bicycle ride. I make sure to get in every good moment I can, but having lupus is kind of like being on call for being sick and those calls have the worst timing.

The loss of time and memories has ricocheted in my heart for years and I continually grieve them. But there’s another fundamental element of loss: me. In losing so much of my capability, I’ve also lost parts of myself.

Lupus has also carved out part of me

Autoimmune diseases can cause visible damage, but they are also dangerous in their ability to cause damage you can’t see for far too long. I’m realizing that’s not just true physically, but also mentally and emotionally. For every loss you can measure, like a bill for your appointment or the time spent on the phone with insurance, there are losses that can’t be measured. They don't make a sound, but they steal something from you all the same.

I was lying in bed recently, facing another flare, when I realized how much of my self-esteem has been chiseled away by lupus. At times, I feel humiliated by my disability, by the things I have to ask for when I can’t care for myself or my kids. I had to make room to humble myself to ask my husband to put on my socks, help me walk, or take the kids to school and make him late to work for the third time this week. My list of humbling requests is depressingly long.

Making room in my life for these burdens feels like it has displaced parts of my personality. How can I be who I truly am when I’m so busy being all the things I don’t want to be? Like being exhausted for no good reason, or flaring, or facing a worsening viral illness due to being immunocompromised?

When I realize how much I want to be, maybe who I would be without this disease, sometimes I feel like I’ll lose my mind. I haven’t figured out how to reconcile with this tornado of illness that's tearing up parts of me and carrying them away like they didn’t matter.

Can I cope with this?

It’s hard to grasp the true extent of my loss. Did I lose my passion from grad school, or would it have faded anyway? What about my child-like sense of wonder? My spunk? My go-getter attitude? I’m not sure anymore because I can never take the other fork in the road – the one where I never became chronically ill. I'll never know who I would have been.

So, I ask myself: Is it possible not to sink into despair? What can I do about feeling this way? How do I cope with a loss that I struggle to describe with words?

I’ve tried a lot of things to help me. I’m in therapy for my childhood trauma, which is helping me learn how to calm down and recognize that things likely aren’t as catastrophic as my nervous system would lead me to believe. Due to terrible dryness from Sjogrens, I've also tried ketamine therapy for my depression and discovered the blessings of psychedelics in a therapeutic setting.

I’m also trying to focus on the good moments, no matter how few or small they may be. Gratitude is very hard to practice sometimes, but it’s worth it because it can truly work and improve my mood. Distractions help too. I'm learning to queue up my favorite TV shows with a little more grace than guilt.

Lastly, I repeat to myself that I’m still breathing; it’s not over. I hope to have a lifelong relationship with my kids. There will be more meaningful opportunities and I won’t miss all of them. And when I do miss them, I’m able to get lots of pictures and videos from family and talk about it with my kids afterward.

This may not be the most inspirational advice I’ve ever given about coping with loss from lupus, but it’s real. I imagine many others are out there going through a rough time as well. What have you lost? And how are you dealing with it?

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