Dependency is part of the human experience. A large majority of the early years of our lives are spent relying on parents and guardians to teach us the ins and outs of life. If you’re lucky enough to make it to old age, you’ll once again find yourself dependant on those around you, just in an entirely different way. For most people, the time from their late teens or early 20s and well into their 60s or even 70s is all about independence — an independence I so desperately crave, but may never fully have.
In my head, I keep a list of the countless things about lupus that frustrate the living daylights out of me. One of which is that I pretty much stopped being an authority on my own body from the very moment of my diagnosis. Of course, I don’t mean that in the sense that I don’t get a say in what happens to me, but more so that I’m no longer the most knowledgeable — or knowledgeable at all, really — about my state of being.
Lupus is an incredibly complex illness that has yet to be completely understood by medicine, let alone anybody else. From the moment I agreed to treatment nearly two years ago, I placed both my health and my life in the hands of doctors, potentially for as long as I’ll live. And from that moment forward, I had to acknowledge there was a large and critical part of my body that I no longer could confidently claim to be an expert.
In the beginning, I was incredibly uncomfortable about the fact there was so much unknown to me about something that was undoubtedly going to play a very significant role in my life. But as time went on, I realized that when it comes to lupus there are endless variables, and even my doctors are just playing it by ear. It’s not that I became resigned to the fact that I don’t fully understand what’s happening with my health. Rather, I know there are too many possible outcomes to try to understand it all.
None of the medications I take every day are designed to treat my chronic illness specifically, and due to that, there is very little way of knowing exactly how the future will pan out. Every sickness and illness is unique, but few are in the same way that lupus is. When it comes to most types of medical treatment, there always seems to be a “blanket” strategy that will work for most people. But with lupus, that’s not the case. Every patient needs to be assessed on a case-by-case basis, and be closely and regularly monitored. What works for someone else my age with lupus nephritis is in no way guaranteed to work for me, and repeated trial and error is the only way of knowing what does and doesn’t work.
What I find most frustrating is that I’m only 22. I have my whole life ahead of me, and I’ll have to spend far too much of it dependent on doctors to tell me about my own body and health. Sure, I can tell you how I’ve been feeling, but I’ve come to learn that I can’t count that as any indicator of what’s going on internally — only my doctors can tell me for sure. Maybe it’s silly, but I find that really hard to accept.
In this part of my life, I want nothing more than to be truly independent, and I’m fighting for it any way I can. But unfortunately, there’s a critical part of me that I don’t have any expertise about and can’t afford to make mistakes with, as the costs could be far too great.
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.