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Trying to Find Some Normalcy in Life With Chronic Illness

When I was diagnosed with lupus, part of why I was so devastated was that I had to wrap my mind around the fact (and accept) that it was going to change my life and ability to live it – forever. Doctors told me I would have to leave school and alter my work or find a new career entirely due to my changing energy levels and treatments as well as capabilities.

I had always been the type-A personality who made spreadsheets of which graduate school I would go to (including the two-year plan and steps to take prior so I could get there).

I had also always been the girl who wanted to be great at everything without thinking too much about it. I was a total perfectionist, by habit, not by force. I didn’t always achieve the things I wanted, partially due to health, but the hard work was something I enjoyed and I felt was well worth my time.

I didn’t comprehend at first or for a long time that I would have to find a new normal. How do you go about that anyway? What would I do with my energy, how would I go about doing less and less and less, or would I ever be able to do more or return to the amount I had done before I got sick? Nobody could tell me or help me.

Finding a new normal… How do you do that anyway? Especially when you are going through what for most people just diagnosed with illness may be the hardest time in your life.

collage of woman taking pictures with her dog
This photo series of me and my dog captures me on a normal but not so great day.

I guess to think about finding normal you have to consider what normal is anyway. Some may say, well, each person defines their own normal. Or, the popular vote or public decides what we all perceive as normal. Based on TV, celebs, books what’s in and out, etc.

Normal, to me, means the balance of being your age or whatever age you feel and achieving school, work, part-time work, a hobby, etc. – things all people, sick or not, strive to do, in coexistence with balancing your illness and/or a relationship and friendships. Doing what someone your age would typically do – going to concerts or out for dinner, a movie even.

When I started this article, I had to stop because of pain. Days later, I’m better and have just painted a room as well as done a bunch of errands. And that total unreliability in my day-to-day ability based on my body is what makes chronic illness so hard. One day you’re an armchair warrior splayed out in pizza pajamas, the next, you are an unrecognizable opposite. In a sense, we are luckier because when we can go and do the things we have been wishing to do, since we fought so hard to get there, it means more to us than it might to someone who has the health to always do it and takes that for granted. I know it doesn’t feel this simple in those moments, but remembering that can help at times.

For me, finding a new normal, or accepting that my normal would be different, started with mourning my old “self.”

Being chronically ill and living a “normal” life… things I remember dreaming of as a far-off reality, a real special treat, because I was never well enough, so plans (as I’m sure those reading this can understand) were and are (always going to be) a hard thing to accomplish.

We are not the people in those annoying pain commercials – those who just need some pain relief for seven hours to keep on or finish their biking. We are the people who are more often than not in too much pain to brush our hair or wash the dishes, and to whom the thought of buying groceries is about as exhausting as getting out of bed. (It would be a miracle to me, and I’m guessing many people with chronic illness, if it was one of those days where I was feeling great enough to bike and just needed an ibuprofen).

When I first got sick, I could barely get out of bed. In time, I could take on one task a day. In the beginning, they were very small, and in time, the size of the task grew. Sometimes, it threw me into a flare just leaving the house, but I never stopped. I would go through this vicious cycle of flare and then plans and then flare and then making plans only to understand there is A) nothing I can do to stop this and B) I had to listen to my body if I wanted things to improve. If I felt tired at a friend’s one night, I would have to leave early and rest for a day or so. That meant putting aside my type-A personality and taking on nothing, or barely anything, so I could recharge for the next round, like a boxer.

Over the years, my chronic illness stamina somewhat improved – and also didn’t. It came and went as my illness ebbed and flowed. But I learned from these times – as crappy or sometimes boring as they were – and now, when they come, I know how to handle them.

What is my normal now?

When I finally started having less flares, I bought a calendar, and it was my most cherished possession as I started being able to fill it up and actually meet the plans (partially, because I felt like I was doing what “normal people” did). Make a schedule – and meet it. I could go to the movies occasionally, get dressed up for dates, take on classes again at the university, etc. The list started to grow and as it did, so did my life with lupus. My “normal” life with lupus. (Which, in all honesty, took some time.)

The most important thing?

Realizing it’s about balance, not perfection – and this goes for people who aren’t sick, too, people who are actually what we think of as “normal.” They may want to be “normal” just as much as the rest of us, not realizing they are the typical paradigm for the chronically ill person striving to achieve what they have.

Some weeks, I’ll accomplish all the things I’ve been thinking about for months, and then some weeks I’ll just hang out and be a bit worse or in a flare, and accepting that has been half the battle. Beating myself up made it a whole heck of a lot worse – then, not only did I hate that I wasn’t doing more, but I hated myself for it too. Put that energy somewhere else. Don’t beat yourself up if you are in that position.

Channel that energy into planning out your next good day. Be kind to yourself.

woman lying on the floor laughing
These photos are of me feeling sick, but having a great time.

It is possible to be chronically ill and to have what we want as normal or to live some version of what we think is a normal life.

It may never be perfect, but it won’t ever be perfect for anyone, sick or not.

Love what you have. Celebrate the gains, the milestones, the good days, because you never know when they’ll come again, and you worked hard to get there.

It’ll make your normal feel just about as normal as anyone else’s, and once you find a groove, nobody can take that away from you. It also makes the “daily fight” a whole heck of a lot more worthwhile.

I have tickets to Guns N’ Roses for Hallow’s Eve. Concert tickets have to this day been a thing that elulded me – set in stone plans that for some reason, I could never make and was heartbroken about. Will I make it this year? I don’t know. I haven’t given up yet, though, and if I make it to Guns N’ Roses, all those missed shows will be crossed off my sad list, ’cause Axl Rose makes it fine in my books.

It’ll all be worth it in the end. I love the quote, “It’ll all be OK in the end. If it’s not alright, it’s not the end.”

I’m still finding my OK (normal), but it does get better every day.

I have had a few good days recently, and some bad. The last six years, having lupus, have been the best and worst of my life. This is because they have made me more grateful for the moments in between and for the laughter and smiles than I was before, when I just saw them as everyday filler and like something I could have whenever I wanted. Now, I know I can’t – and beyond that, that it can all be taken away, at any point.

Whatever normal is, I live for now, the here, this moment, “normal” or not. We have weekly “chemo” day in my house, and jokes about canes being too warm after you hold them for too long (like a seat on the couch). Is this “normal?” No. But it comes with the territory, and I make it fun, I make it my own, and in time, it has become my normal.

When I think back to being a spreadsheet-making undergrad, I wouldn’t trade or go back to that – even if now, I can’t wrap this article up the way I want to because I’m in pain. Tomorrow, who knows. I may be bungee jumping. New goal: Enjoy the ride.

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