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Finding Self-Worth in Life With a Chronic Illness

“But how will she earn her bread?” The voice on the other end of the phone asks my soon-to-be husband expectantly. The question surprised him, and he didn’t really know what to say. To him, it didn’t matter. But that question, casually thrown out by my soon-to-be in-law, echoed things buried deep down in my subconscious — although I would not realize it for many years.

At this point in my life, I had quit my job in order to move in with my boyfriend. Distance and commute limitations dictated that I would have to find work somewhere closer to where I was now living, but I had not yet started working again. I expected to go back to work shortly, though we had already discussed that when we started having kids we both wanted me to be able to stay home with them, especially when they were small.

Although I already had frequent pain and fatigue, at this point in my life I had no idea it wasn’t the norm. So I continued life as it was, with no consideration or thought to what the future would bring for me in regards to my health. We had children not too long after we got married. By the time our children were school age and I had an inclination to rejoin the workforce, my health had taken significant downturns and I had daily debilitating pain and fatigue with no answers.

Like many of us here, I started to recognize that what I could do versus what others my age could do were drastically different, and in a world that is not very understanding of differences or disabilities I felt considerable and constant pressure to be doing more. In America, at least, there is very much the cultural mindset that your value is in your job. How much money do you bring in for the family? How many things do you do for others? I couldn’t say how true that is in other countries, but certainly, I have run into this mindset frequently in the United States.

I grew up in a very demanding and abusive environment, where there was no room for failure, differences, disobedience, illness or self-worth. It was a grave sin to “raise yourself above others” and suffering was expected. The trauma experienced from my childhood had given me a very solid foundation of personal persecution and the inability to trust my own instincts, which had been systematically suppressed while growing up.

This was added to when I started seeking medical care and was met with “You’re faking it” and the like. It was so easy to believe them. I’m just being dramatic. Nobody has pain every day. My instincts were telling me something was wrong, but I was woefully unprepared in skills, knowledge and self-confidence to listen to that instinct and act on it.

Because on top of fighting doctors, I was fighting myself. That voice in my head that told me I had to keep going was enforced when I was told “push through” and would come out loudly. And often. When I couldn’t push through, or I had pushed through so long that the inevitable crash was debilitating for weeks, I laid there feeling useless. Worthless. Work was a distant memory. I feared that my husband would get sick of me always being sick and leave. I thought I was lazy, weak.

I struggled with this for almost two more decades. I still struggle with it in many ways. It took two years of weekly therapy to even begin to realize that my sense of self-worth was so low because I put on such a good front I could fool even myself sometimes. I was taught that acknowledging your own skills and intelligence was vanity.  It was a weird shift when I started seeing the things that my family and friends would tell me about myself.

That I am intelligent, and what’s more, I’ve learned to wield that intelligence expertly. This in itself has given me confidence in a lot of areas that were lacking before.

That I am kind, at least to others. I’m working on being kinder to myself.

That I am absolutely not lazy, but instead have limitations that many people don’t have to think about or understand. And that not all strength is obvious.

That the things I am able to do for my family are enough, even though there is always more that needs to get done. That’s just life. There will always be more things to do. I don’t have to break myself for others in order to be loved or valued.

That I’m a good writer. Writing articles for The Mighty has helped build my confidence, and I am about to start a project that has been a long time coming, which will hopefully lead to me having a book published. Hopefully more than one, eventually! This has been a dream of mine for a very long time.

That I’m a great patient advocate, and I’ve learned to use those skills for myself. I learned them for my daughter, and a few years ago had that light bulb moment where I realized I didn’t apply those skills to myself and started going, “And why don’t I?” Once I realized that, it changed my entire approach to how I manage my health care.

Part of the process of recognizing my value outside of the things I do for others was building trust in my instincts. Instincts that had been trampled through childhood, then trampled by the health care system I was in for 15 years as an adult. Turns out, my instincts are often spot on.

It hasn’t changed the fact that I hurt every day. It hasn’t changed that I am always tired. I still have lupus, Sjogren’s, fibromyalgia, chronic headaches, spine issues and more, or that I now work too much for the state of my health. But it’s allowed me to stop when I have to with less guilt, and hopefully, eventually, that will be with no guilt. That in itself has made my pain better because I am much better about not just pushing through until I crash for weeks (though it still happens). I take time off now just for the sake of having time off, since we all know that time off due to crashes is not restful or pleasant. It also takes a lot of mental energy to beat oneself up. I had to find an equilibrium within myself that allowed me to see these things and really start to feel them.

It’s not a process I would have been able to do by myself. But I can say that finding a sense of self-worth and confidence in myself, even though it is still a work in progress, has been one of the most positive changes in my life.  That question of “But how will she earn her bread?” no longer represents the way I think about myself.

Remember this — Your illness does not define you. While it dictates many things in our lives, remember that you have value because of who you are.

Getty image by Kurylo.