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What I Would Change About Having Lupus

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It is nearly Fall. I love the Fall season perhaps the most and the crisp air in the mornings when I walk outside. I love the pumpkins and Halloween. I love scary movie marathons and eating too much candy. I love the decorations and pumpkin carving. But with the Fall comes the cold weather and it sets into my joints and makes them ache. I bundle up and I get weighed down by it. I feel like as the Fall settles in with the change of color on the trees, my pain comes in with the change of season and I become posted up on the couch for what feels like an entire season.

Walking up the stairs feels impossible.

Each time I go up the stairs I feel like I am being pushed back down by an invisible weighted force and I have to fight against it to get up the stairs. My wardrobe becomes lupus-friendly— soft clothes that won’t hurt my skin or hands. No buttons, no zips. Leggings, sweatpants only, long, soft shirts. Sweaters. Brushing my hair hurts some days, just holding the hairbrush.

These are things I hate about having lupus. I hate that even though I love the Fall I can’t really enjoy it. I hate that even on beautiful days, I can rarely walk the short distance to the park with my son because it hurts my knees. I hate that looking back over my life, I have missed out on so many years, and my phone is filled with pictures of me with mobility devices and my life is filled with cancelled plans to great things that I couldn’t show up for because I was ill. I hate people’s ignorant comments. Well intended as they may be. I wish I could change that. Even after 10 years of experience with it, it doesn’t make it easier.

I wish I could change my future and my past of how much I could do or would be able to do with this illness, but I will never be able to undo what it has taken from me. People will ask me when it will go away sometimes, as if I haven’t asked myself that, and as if the answer will change. The answer “you’re never getting better” sometimes feels crueler with time.

Especially when flares come back, or come back after you’ve been well for a long time, and you lose your progress. That is what sucks the most about chronic illness… it comes and goes and comes and goes and you never know when it will come back. Usually it is during the most important event or in the middle of the grocery store or on a hot date and then your pain will show up just to be convenient.

I have never had a flare or bad day start or “show up” at a convenient time.

I wish, no matter how much progress I’ve made in my recovery, that I could change this fact, and take away the unpredictability of it. I wish I could have more control over my illness. I would change this if I could. It affects not only me but people around me.

And though I’ve come to terms with it, I would change having chronic illness if I could, because I wish I could change what it has taken from me at such a young age. And I know people reading this will relate to the feeling of loss when you can’t ever get that back and will wonder what would have been if you hadn’t lost so much of your life due to illness. I do think, however, that experiencing pain can give people a greater appreciation for life than those who don’t experience severe pain. People with chronic illness often learn to see a different type of beauty in life due to their heightened state of awareness from knowing pain.

They are more in tune with things from having to experience pain and it allows them when they do feel happy, they really get to feel it. I have found that to be a benefit for me of having chronic illness. And I am more sensitive and loving and empathetic than I believe I would have been otherwise.

I am limited in a lot of ways by disability and not able to do all of the things that I once did. This affects me in my new roles in life as a parent and as a wife. I love the Fall. If I could I would do a lot more Fall things with my family, things that I used to do but now cannot or that now I need assistance doing or need to modify the way that I do them. I cannot go out for as long, have to go out at specific times of day, need help at times, get tired, and am overall limited in how I can participate compared to what I used go do…. Which sucks.

When I think about what I would change, it would be things like this. I wouldn’t be limited. But I am.

In trying to find recovery from lupus and to find the best medication for myself I always fought to find one that I had the best functioning with, because I didn’t want to live a life where I was miserable with chronic illness and accept that I couldn’t do more. But chronic illness is chronic illness… it comes and goes… sometimes, even in recovery, you have flares, and the hard part about chronic illness is accepting it over and over again as it comes back time and time again, which it will. And each time it does, you have to re-live these truths that you have lost perhaps your youth, and your abilities, and that, no it isn’t going away…. There is no cure, even if you feel better for a while.

Recovery is finding happiness in yourself and finding your best life and best functioning with chronic illness, because it isn’t going away, no matter what happens with the illness. You have to live in spite of.

That’s what I’ve done…. No matter how hard it is or no matter what I wish I could have changed or want to change. (Because I can’t).

When I think of what I wish I could change, I try to remember all of the things that I have done in spite of as well… after my diagnosis, and what I haven’t let my disease take from me. Being proud of what I accomplished in the years since my diagnosis, and where I fought to win every step of the way. I graduated from University (it took me longer, but I did it) — and got accepted to a Masters program of my choice. I am now an author. I ended up taking a different path in life, and fought hard each step of the way.

I didn’t let lupus win then, and I won’t let lupus win now or ever, and you shouldn’t either.

Originally published: October 22, 2021
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