I have a chronic illness that I share with millions of people across the globe. And I am constantly apologizing for it.
Unfamiliar to the general population, this chronic illness has been nicknamed an “invisible disease” because it is an auto-immune disorder that wreaks havoc internally. In fact, until the symptoms become so severe that they can be seen by the outside world, no one would ever know that I, or others like me, have lupus. Considering how common it actually is, when our symptoms do become visible to the outside world, lupus probably is one of the most misunderstood and misdiagnosed of them all. When people do find out we have it, that’s when the apologizing begins — first from our friends and family, but eventually to them.
Having lupus can come with some truly terrifying symptoms and a host of equally alarming treatments. Unfortunately, what it does not come with is a cause or a cure. People with lupus spend more time apologizing for the effects of their illness than most war-torn countries do for their militancy. Yet, more so than being tired of everything I’ve mentioned — and believe me, I am sick and tired of having lupus — I have become absolutely depleted of all energy that it takes to say, “I am sorry for (fill in the blank) due to Lupus.”
Chronic illnesses have treatments without cures
Autoimmune diseases occur when the immune system of an individual’s body treats healthy cells of his/her very own body as foreign cells and attacks them. These diseases cause variations in organ functioning, abnormal growth of organs and destruction of healthy body tissues. According to a recent article in Business Wire, the global autoimmune disease treatment market is expected to grow by 3.8% over the next five years. Surprisingly, its market value in the pharmaceutical industry is expected to reach $15.97 billion by that same time. That isn’t because so many people have it and it’s increasing exponentially, as evidenced by its growth rate. It’s because chronic illness, specifically autoimmune diseases, are illnesses that have treatments without cures, and these are the most costly of all.
From genetics to environmental factors, studies are still ongoing to determine the link between those who have it, and those who do not. Everything from processed foods to family members have been linked, but not a single study has been able to definitively identify a cause for this chronic illness. Without knowing the cause, without having a clear-cut conclusive test, it is hard to work on a cure. Close friends, of course, would begin crying and ask, “ ..but is there a cure?” My reply: “ I am so sorry, love, but no, not yet.”
‘Mom, will I get it, too?’
I remember the day I had to tell my boys that I was diagnosed with lupus. One of the many questions they asked on that fateful afternoon was “Mom, will I get it, too?” I could have chosen to lie at that moment, but other than Santa Claus and the Tooth Fairy, I had never lied to my children when it came to the important stuff. And I wasn’t about to let lupus rule and change every part of my life. “I am so sorry, baby, but I just don’t know.”
With each new symptom that popped up, the thought that I was/am a burden to my family and friends was only growing. There was an overwhelming obligation for me to apologize for these things, which I realize now I had no control over.
“I am sorry, baby, mommy’s too tired to go out for laser tag.” “ I am sorry, my love, Mommy can’t walk around the renaissance fair; my feet can’t handle it.” Yelling at them, “Dammit! Be quiet. I have a migraine and I can’t take the noise,” only to apologize five minutes later for losing my temper.
Calling in sick to work before I finally gave up working a full-time office job: “Hey, guys, I am so sorry, but I can’t make it to the office today.” Apologizing to friends: “Hey, guys, I know it’s last-minute, but I just can’t go out tonight.” Even apologizing to my dogs, who spend just as much time as I do staring at the sunshine in all its glory from my upstairs bedroom window: “I am sorry, my babies. I know you need to go out to the dog park and run, but mommy just can’t do it today. Tomorrow. I promise.”
Effects of lupus on mind, body and spirit are unknown
The effects of spending the majority of your days apologizing for what you have little to no control over are easy enough to figure out. It is heartbreaking to be diagnosed with lupus. Yet, as I enter year six of being diagnosed with this terrible chronic illness, I realize apologizing is unnecessary.
When I think of all of the energy I’ve wasted apologizing for having lupus, I realize I am just as tired of saying “I am sorry” for having lupus, as I am for actually having it. Lord knows, if I could change it I already would have done so. I can’t change the part of me that has lupus.
But what I can change, is the part of me that accepts responsibility for something I had no part in acquiring. In fact, after this last one I am about to say, I am done saying “sorry.” So here goes:
Sorry, I am not sorry.
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.