The #1 Obstacle to Living Well with Lupus

A crossroad

Photo by Amy via Flickr

Along the 16+ years that I’ve been on my own personal lupus journey, I’ve run into a lot of other lupus patients, on their own journeys. I’ve heard a lot of stories…once you meet someone with lupus, the stories usually come pouring out. I’ll never forget what one woman, easily hitting her 70’s, told me, “Why should I accept it? I shouldn’t have lupus. This isn’t the way my life is supposed to be.”* Her body was ravaged because she didn’t take her medication, stubbornly refusing to acknowledge that she had a disease. I was absolutely stunned. Nobody should have lupus (duh) – but we do. And stomping your feet, whining “why me? and “I should have better!” doesn’t magically make it disappear. I was just plain shocked that a grown woman was acting like a stubborn child and hurting herself because reality wasn’t the way she thought it should be.

But, believe it or not, we all do this at some point. At some point, every lupie has done something dumb because at that moment they rejected the reality that they has lupus. In college, I once walked over two miles along deserted road under the blazing sun. And you can bet I wasn’t wearing a drop of sunblock. Dumb. But it happens to everyone. We don’t want to have lupus, so for a minute, a day or for years, we go about our business, acting as if we don’t.

Nobody wants to have lupus. But, guess what, if you’re reading this, chances are you have lupus.

You are holding you back

The biggest hurdle in living a successful life with lupus is accepting that you have lupus, that lupus will be a part of your life going forward and, most importantly, accepting that your life will change in ways you can’t know now. 

I get it; it’s absolutely terrifying. Living with lupus means living with a level of uncertainly, living in the unknown and that freaks people the hell out. So, instead of accepting that and working with it, people do something, anything else to cram themselves back into what they’ve always known. They keep doing all the housework because they’re spouse and kids would complain about having to pull their own weight. They say “yes” to every request their boss and coworkers make because they don’t want to be labeled as lazy or unreliable. They don’t take their medication or pace themselves because they think they should be able to do it all at their age and taking pills is for old people. They don’t properly treat themselves because treatment means admitting there’s something wrong.

Refusing to accept your life as it is and trying to force yourself into the tiny box of how you wish your life would be or think it should be is the biggest hurdle between you and living a fuller, more satisfied life. In fact, denial is probably making your health worse.

So…why do we do this?

So what pushes us to kill ourselves with the “shoulds”? Fear. Shame. Guilt.

There’s nothing wrong with wanting to fit in, and unfortunately, it can be very hard for healthy people to know how to handle someone with lupus. Some put up equally thick walls of denial and tell us we’re being dramatic, attention-seeking, or just plain delusional. Some treat us like glass, afraid to ask us to do anything for fear that we, unpredictable weapons of chaos that we are, will explode on the spot or something. Some get pissed off that we don’t “eat healthier” or haven’t tried herbs or detoxing, and since we obviously don’t really care about our health (because if we did care, we’d eat nothing but kale all day), they abandon us for less-complicated people. So, we hide it, downplay it, water our symptoms down so we don’t make our friends, family and coworkers uncomfortable and because we fear they’ll ridicule or leave us.

But you know what? We say that stuff to ourselves as well. We shame ourselves for not doing more, being more. We feel guilty about letting others and ourselves down. We see-saw between trying to being frantic and trying to squeeze as much juice out of ourselves as possible and then wrecking our bodies and not being able to move for three days. We get depressed. We tell ourselves that our lives are over and nothing it worth getting up in the mornings anymore. We bite our nails in anxiety at the next doctor visit, expecting the worst news. We have no idea how we’ll live our lives from here – what if the insurance disappears? What if my spouse leaves and I can’t pay rent? What if I can’t find a job?

We make a mess of ourselves even before anyone else whispers in our ears.

And you know what? It’s bullshit. Very simply ask this: would you shame a person missing their arms about not carrying the groceries? If a child came to you saying that couldn’t do something because it really, really hurt – would you make them feel guilty or tell them they’re just pretending? Or if you saw a friend making themselves miserable trying to run the PTA or exercise 6 times a week, wouldn’t you tell them to slow down for their good? The kind of criticism and stupid comments that lupus patients (or any chronic illness patient) endures would never be applied to people with other illnesses, or the elderly, or to children. Why? Because it sounds stupid.

But you know what? It’s okay. It’s normal. Let me repeat what I put above: Living with lupus means living in the unknown and that freaks people the hell out. And when people freak out they freak out in all sorts of weird and annoying ways.

The big question

Okay, now that I’ve ranted a bit, the big question is this: is the status quo worth the stress and physical wear of maintaining? Is it worth killing yourself to make your boss rich? Is it worth being depressed and exhausted to live up to some mythical standard for your kids? Is it worth feeling shamed to keep up with you so-called “friends”? Is it really worth it?

The unknown is scary, but it’s also full of potential.  If the life you have is leaving you exhausted and miserable, then maybe it’s time to make some scary choices and start building a life that fits your needs – not the other way around. If your friends are basically being dicks about your lupus, make new friends (this article at Nerd Fitness gives great advice on how). If you’re job doesn’t fit, look at alternative options. It takes time, it takes commitment and it’s hard, but is it really any harder then pushing yourself to keep up the same old expectations?

Another woman came to speak to me at a lupus function once. She wanted to make it a point to introduce herself and give me her condolences on my condition, explaining that her daughter had died of lupus a few years earlier. “She didn’t even bother with a doctor; she just kept living her life just the way it was.” she told me*. And her daughter was dead before she turned 30. I’m sure she didn’t mean to, but her story sure scared the crap out of me. Apparently that girl has worked her ass off to be “normal” and didn’t make it out of her 20’s. Her story made me decide that “normal” was not my friend.

So, what kind of life do you want to live? Is the stress of keeping your status quo less than the stress of forging a new path for yourself? It’s not an easy choice and it’s not a choice that has a right or wrong answer. It’s logical to want to keep the comforts of the life you know and it’s logical to want to try to create something new. However, in the end, our biggest obstacles in coping with lupus is pretending that there isn’t a choice to be made at all – pretending that lupus isn’t something that is part of our lives and needs our attention makes both choices null and void. Without treating lupus you will not be able to keep up with your everyday life for long and without treatment there’s no way anyone can have the strength to build a new life. But whatever choice is made, make it because it’s what you want – not because you feel that your life should be a certain way.

*Quotes approximated since this was over 7 years ago and I have the memory of a 90-year-old.

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5 thoughts on “The #1 Obstacle to Living Well with Lupus

  1. Great read !! I agree. It is what it is. These are the cards we were dealt. It’s up to the player how they choose to play the game.

  2. Thanks! I totally feel the same – I never planned any of the stuff I had to let go of when I was high school and college having lupus, but it was what it was and I do what I can going forward.

  3. by far the best one i read yet! You were so dead on about it, because man o man do we try to be in denial and try our bestest to not be on all those meds but hey at this point it is what it is!!

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