Lupus Accommodations - Giving In Isn't Giving Up - Reposting an oldie!

It's always fun to revisit old posts! 

This is an article I previously published almost 10 years ago now. I thought someone might need to hear it today, as it certainly still resonates for me. As I continue to build and grow my own business, I'm reminded that Giving In is most certainly not Giving Up. Just because I have to go slow here, or pass on an opportunity there, doesn't me I'm throwing in the towel. In fact, it means I'm being strategic in choosing how to accommodate my illness, while still doing what I love. While still kicking butt. :) 

Many of us have made concessions in order to live well, despite lupus. Mine might be different than yours - but what's important is that the choices we make enable each of us to live longer, healthier, and happier with lupus. In the comments of the original post, people volunteered their own concessions - of passing up career opportunities, foregoing child bearing, and asking for help in everything from child rearing to housework, as well as where to shove those feelings of guilt when they arise from conceding. Here's the link to the original post - if you're interested in reading those comments. Always helpful to know you're not alone! 



I had the pleasure of stumbling upon a few online discussions regarding my book recently. One thread of comments really hit home. It was in regard to the fine distinction between fighting the disease (as well as your body and its limitations), and giving in to lupus (i.e. slowing down, accepting that you can't do it all). Many people assumed that giving into the disease (slowing down, saying "no" every once in awhile, reassessing one's responsibilities at home and at work) was the same as giving up - that if you stopped fighting, you were letting the disease win. Specifically, the discussion was in regard to my decision to go part-time at work years ago...that by doing so I was giving up the fight, rather than sticking it out and not letting the disease get the best of me.

And this is a fair assessment - I, too, thought the same thing...for way too long. Giving up my career and letting go of my identity at work were two things I desperately tried to avoid. I held onto them as if my life depended on it. What I came to realize, however, is that what my life REALLY depended on was the ability to put aside my ego, my pride, and my stubbornness, look outside the (career) box that I had lived in for so long (and liked!), and say, if I make this one concession, look at the life I'm going to get back. Making this one accommodation wasn't going to ruin my life - it was going to save it.

In my opinion, giving in was the only way for the disease and me to co-exist. If I'd kept fighting, I wouldn't have been around to tell you about it. And I believe that's the decision many of us come to - we realize we're not invincible and that we can't do it all. We just have to figure out how and where to let ourselves off the hook for once. We have to learn how to stop, take a moment to listen to our bodies, and respond accordingly. We have to work with the disease, rather than against it.

One women echoed these sentiments, putting it better than I could. She said, in reference to someone else's argument that not everyone can quit their job as I did, "You're right. Not all of us can work part time or stop working altogether. I think, though, that there is a difference between giving up the fight and giving in completely. I am to the point where I am finally accepting that I have this disease and that sometimes, I have to defer to it. If that means lightening my work load or skipping out on some of my social obligations, so be it. (Ms. Gorman's) description of how she learned to stop fighting and listen to her body is exactly what I'm going through right now. It's hard to realize you're not invincible and you can't just work through the pain and fatigue...I have tried for years to keep up with work and school and social activities, telling myself I was fighting lupus by living the life I wanted to live, regardless of the disease. But I'm to the point now where I know I can't fight it anymore. I am exhausted and unhappy all of the time because I just can't keep up. I can still do all of those things, but I have to slow down if I want to take care of myself. "

I haven't talked about my decision to stop working in awhile - but I just thought I'd highlight a few points that are sometimes lost in translation when I talk about leaving my career behind. Yes, I quit my job, and yes, I was privileged and lucky and fortunate. But sauntering into my supervisor's office to tell him that I couldn't keep working full-time because my body couldn't hack it was one of the hardest things I will ever have to do. On so many levels, I felt like a failure. But there was one reason that I persisted - that allowed me to walk in and resign from the management position I so dearly loved. Because at that point, my life wasn't worth living, and I knew I had the power to change that fact. I knew that if I let go, I'd get back the life I deserved. I could once and for all stop fighting life, and start living it.

So why was the decision to stop working so difficult? I know, I know. On the surface, it would seem like every person's dream to be able to just walk away from a job (or work part-time, which is what I did) in order to focus on health and wellness. But it's never that easy. Here are just three of the reasons I was considering at the time:

1) I was the sole bread winner at the time I went part-time. Yup - that's right. Johnny had gone out on his own and started a business a few months beforehand, and was still ramping up. Sure, he had the potential (in the years to come) to make his fair share of our household income...but at the time, he was making exactly zero. Ziltch. Zippy. So to say that I had the luxury of reducing my salary because I could rely on my husband isn't exactly true. What is true, is that my health deteriorated so badly that I knew it was now or never - either I make a switch and we deal with less income, or I watch my body spin out of control for ever. It was so hard to give up that money. But you know what? It was only money. And we realized there are a ton of ways to save money....when you really have to.

2) Thinking it is entirely different than doing it. I'm telling you - saying you're going to/would like to/wish you could step down from full time work is easy. It's kind of like wishful thinking. But realizing the moment has come for you to actually make it happen is an entirely different story. In theory, we all may say we don't want to work. But actually going into your supervisor's office, saying you're not strong enough or healthy enough to keep doing what everyone else can, is about as tough as it gets. It takes courage, and strength, and resilience. You have to be a fighter to do don't talk to me about not fighting. That was the greatest fight of my life right there. When I walked out of the office after coming to the agreement with my boss to work part-time, I thought, "Alright now. I think I might just win this thing."

3) Along those same lines, your identity, whether you like it or not, is typically intertwined with what you do for a living (at least it was for me.) You work hard in school to make this happen. You work even harder AFTER school to ensure that you're valued and appreciated for your efforts; that your worth isn't overlooked or underpaid. So what happens when all of a sudden, you change gears? You suddenly have to tell yourself that your identity ISN'T what you do, and you have to convince yourself that you're worth something even if you choose less pay, or less responsibility, or less prestige. Everything you had built up in your head as worthwhile and worth fighting for becomes obsolete. Telling yourself that you can still contribute and that your self-worth isn't decreasing is tricky. You have to work at it. In fact, you have to make a career out of it. But allowing yourself to become a happier, healthier individual enables you to become everything you want to and more. And for years to come.

There you have it. Just a few things to consider when you think you don't have it within yourself to make the changes you need to in order to live well with a chronic illness. It may not be a change at work, as it was for me, but rather at home, or in your social life. Let me tell you -  I don't regret one move I've made...only the time it took me to wise up and make them!


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