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Moving Past Lupus Self-Doubt and Guilt

May 27, 2015
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It's Time to Let Go of Lupus Self-Doubt

I think everyone experiences periods of time when they think, “What am I doing with my life?”

However with lupus, these thoughts are fueled by a disabling inability to do normal, expected activities, and maybe even to stay at your current job — one you worked very hard to get.

Let’s face it, what we achieve with our work, be it title, solid income, or both, can play an impactful role in how we view ourselves. It often affects how others see us as well.

It is a part of that often-elusive thing we all seek called self-esteem, which takes a serious beating when you have lupus. You feel like whatever you were meant to become…well, lupus has side-tracked you and your dreams.

But Lupus Self-Doubt Goes Deeper

All of this disruption to your life is undoubtedly increased by the guilt and the strain lupus puts on your relationships and the feeling that you are half the person you should be to your kids, your spouse, your friends and family. You feel stretched to breaking point, yet you know you are only performing at half-capacity.

Added to all of this, you probably find that your train of thought is often derailed by lupus brain fog and you find yourself stumbling to remember appointments, your PIN number and even how to spell certain words correctly — ones you know with certainty that you know how to spell.

Heck, sometimes I have trouble remembering which child’s name I need to use. Admittedly, I have four children, but the kids probably do not appreciate being called the wrong name — especially if it is also the wrong gender.

Then there is the cold weather and all the things I cannot do or avoid doing with my kids because it places me outside where lupus and Raynaud’s (and my thyroid disease) makes my body hurt like I am being burned alive by an icy-fire. (Those who do not have lupus do not understand my term “icy-fire,” while those with lupus know exactly what I am talking about.)

I feel I am failing a bit as a mom. My kids will probably not have a memory of me building a snowman with them this year. No, I do not want to build a snowman. Thanks a lot, Frozen, for making that a common phrase around my house.

What Can We Do?

So what can us warriors do when it feels we are not who we are supposed to be; when we question what are we doing with our lives?

I believe there is action you can take each day to feel that you possess some control over who you are, who you become and the purpose your life has.

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    Reclaim Your Purpose

    I think the root of all these feelings of being lost and overtaken by this disease is that we succumb to defeat on some level. Even if it is just a little. Yes, we are battling for our lives, but that little voice inside us asks sadly, “Where did the old me go?”

    When you feel that, it triggers a level of defeat somewhere deep within you. I think we need to grieve for the loss of our old selves, then reclaim a new beginning of who we are now.

    Focus on your strength, your courage, and the ways that you keep pushing on. Maybe your purpose is to serve as an example of strength to others.

    Maybe it is so someone else dealing with chronic illness does not feel so alone. Maybe you are supposed to lead by example. How can we not be proud of that kind of legacy?

    Maybe there is greater purpose to your life than the typical everyday achievements that you accomplished before lupus. Maybe those things don’t mean as much as we think they do.

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    Next page: growing to recognize our purpose and moving on from lupus self-doubt.

    Barbara Leech
    Barbara is a mom of four who has battled Lupus for more than 29 years. She considers herself a survivor of all things: lupus, divorce, and starting over. See all of Barbara's articles
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