Not crazy, not alone, and not sick forever? Three things we're definitely "NOT"!
There are two questions I never ask my architect: Are we driving you crazy and are we still your favorite clients? I don't ask because from time to time, we probably are, and we're probably not, respectively. But alas, that's the nature of working together on a major house renovation. Things are bound to get hectic, and as first-time renovators, Johnny and I are bound to ask silly questions, waste some time, and second-guess ourselves. In fact, I suspect my architect's answers to the questions above change on a daily basis, depending on the voice mail messages from me in his in-box, and the number of emails we've exchanged before noon. Thus, I prefer not to ask, so then I don't know. For sure.
There are a few questions I no longer ask myself about lupus, too. Not so much because I don't want to hear the answer, but primarily because I have to trust myself that I already know the answer. Here they are:
1) Am I crazy?
Of course not. It's lupus and its symptoms that are crazy...not me. The way those debilitating symptoms, painful side-effects, or drastic medications make me feel shouldn't be ignored, much less denied. They are absolutely, positively real - and I shouldn't pretend otherwise. For instance, was I crazy for feeling so down and out about my hair loss? No way. I'm wasn't imagining it, and it WAS a big deal. Was I crazy for feeling nervous, a bit reluctant, and maybe even a little embarrassed about approaching my boss regarding an accommodation at work? Of course not. I think that's one of the hardest things one has to do in regard to a chronic illness. The task shouldn't have been underestimated. Am I crazy for feeling anxious about starting a new medication? Are you kidding? New side-effects, new limitations, new requirements - you never know what you're going to get, and that can be, ahem, a tough pill to swallow. (Come on now, you knew where I was headed!)
2) Am I alone?
Absolutely not. I've met and talked to enough lupites around the world to know that I'm not the only one whose life is chock full of lupus trials and tribulations. It can be tough to negotiate the world of a chronic illness. But the consoling news is that for almost every issue we find ourselves up against, there's someone else out there who's felt the same way or experienced the same thing. The ideal situation is to connect with those people. But until them, you just have to believe that you're in good company.
3) Am I going to feel like this forever?
No way. Emotionally, physically, mentally, spiritually - I've changed one hundred and eighty degrees, three times over since being diagnosed with lupus. While we can't necessarily predict symptom activity or the trajectory of a disease, I believe we can better prepare ourselves for the physical and emotional changes our body experiences, thus arming ourselves with positive, productive methods for combating our disease. The goal? To courageously and definitively live well, despite lupus.
There are a few questions I no longer ask myself about lupus, too. Not so much because I don't want to hear the answer, but primarily because I have to trust myself that I already know the answer. Here they are:
1) Am I crazy?
Of course not. It's lupus and its symptoms that are crazy...not me. The way those debilitating symptoms, painful side-effects, or drastic medications make me feel shouldn't be ignored, much less denied. They are absolutely, positively real - and I shouldn't pretend otherwise. For instance, was I crazy for feeling so down and out about my hair loss? No way. I'm wasn't imagining it, and it WAS a big deal. Was I crazy for feeling nervous, a bit reluctant, and maybe even a little embarrassed about approaching my boss regarding an accommodation at work? Of course not. I think that's one of the hardest things one has to do in regard to a chronic illness. The task shouldn't have been underestimated. Am I crazy for feeling anxious about starting a new medication? Are you kidding? New side-effects, new limitations, new requirements - you never know what you're going to get, and that can be, ahem, a tough pill to swallow. (Come on now, you knew where I was headed!)
2) Am I alone?
Absolutely not. I've met and talked to enough lupites around the world to know that I'm not the only one whose life is chock full of lupus trials and tribulations. It can be tough to negotiate the world of a chronic illness. But the consoling news is that for almost every issue we find ourselves up against, there's someone else out there who's felt the same way or experienced the same thing. The ideal situation is to connect with those people. But until them, you just have to believe that you're in good company.
3) Am I going to feel like this forever?
No way. Emotionally, physically, mentally, spiritually - I've changed one hundred and eighty degrees, three times over since being diagnosed with lupus. While we can't necessarily predict symptom activity or the trajectory of a disease, I believe we can better prepare ourselves for the physical and emotional changes our body experiences, thus arming ourselves with positive, productive methods for combating our disease. The goal? To courageously and definitively live well, despite lupus.
Comments
Stay well,
Lauren
-Andrea
In the last year, I was diagnosed with thyroid cancer and Lupus at age 33. It was devastating. I found myself angry about all the things I could no longer do. But, when I found your blog and book, I felt that I had some control again. You have given me much needed encouragement. I want to say THANK YOU from the bottom of my heart!
Aimee
Take care - SG