The Frustration of Not Understanding My Own Illness

The Frustration of Not Understanding My Own Illness


One of the hardest parts of having lupus is how much of the unknown surrounds it. I’m not talking about just a lack of awareness among the wider population, although that is a problem. I’m speaking specifically of the fact that every day I live with a chronic illness about which I have so little concrete information, that I’m not even sure I’d consider myself to be an authority.

It’s really strange to have to consider yourself constantly in the process of learning about something that’s a dominant part of your life — but I have to. Don’t get me wrong; I can tell you all about what it’s like to live with lupus and struggle with different aspects of it in certain ways every day. But when it comes to the cold, hard facts about lupus, about how much I actually know about it, I’m far from being an expert, and that’s really frustrating.

It’s really frustrating to know that in a world filled with regular medical advancement and paradigm-shifting breakthroughs, they still can’t seem to figure out what causes my condition, let alone how they possibly might cure it.

The truth is there are millions of people who live with lupus, and no matter how long we’ve had it, none of us can claim to be experts about our own disease. Every day, as I take another round of medication, I’m placing my faith and my life in the hands of doctors who, though absolutely amazing in their own right, are simply making a string of educated guesses.

And I know how cynical that sounds; please understand it’s not that I’m ungrateful. But I’m walking a hard line between incredibly grateful and absolutely frustrated. Of course, I’m grateful for the medicine that repaired my health and kidneys and is ultimately keeping my body from destroying itself. But there also is a part of me that’s more frustrated than I’ll ever be able to properly express.

My frustration stems from the fact that nothing that is prescribed to me is actually treating my condition, but only aiding in managing it. Having done research on many of the medications I take, knowing the potential and likely side affects of some of these drugs, and that it’s all only to manage my condition, well, I’m sure you can understand it’s a hard pill to swallow — pun definitely intended!

I have a need to be well-informed before I give my opinion on anything. Yet, when it comes to lupus, the one subject I’m more emotionally driven or connected to than any other, the best I can present is anecdotes. If you ask me for any solid information, like a cause or cure, I have no choice but to reply that I simply don’t know, and nobody does.

The only thing more frustrating than the fact that I can’t explain my condition to someone else, is that I can’t even explain it to myself. All I know is that inside me I harbor a big, black unknown whose only mission is to force pain and struggle upon me for the rest of my life.

But amid all of my frustration, I remain hopeful that one day we’ll all understand more about the black wolf that is lupus, and that one day, when someone asks me if there’s a cure for my condition, I’ll be able to smile broadly and say “Yes!”

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

One comment

  1. Dalila says:

    Hello!
    Yes, that’s why my motto is #WeNeedaCureforLupus and I’m part of every lupus research and event related to lupus. That’s the only way forward. There’s no cure and no explanation so far, that’s a fact, but it doesn’t mean that it has to be like this… forever. Lupus didn’t happen due magical reasons, so what we have to do is to find the real reason and cure!
    Best of Luck 🙂

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