I was once told by a person in a responsible position in a patient advocacy organization to “be positive, let them know that lupus isn’t all that bad. Don’t be negative.” The message this well-meaning person seemed to want was more akin to “celebrate the survivor,” a phenomenon borrowed from other disease advocacy realms. And the message irritated me.
Certainly, it is possible to “survive” certain serious, even life-threatening, illnesses, and I’m very happy for those who have done this. Whether it is cancer, diabetes, or another health challenge, being able to get beyond it and feel healthy again must be a tremendously joyful sensation, as well as encouraging for those who are still battling that particular illness. Certainly, our society celebrates the survivor, heaping praise and titles such as “Courageous” or “Inspiring” upon them. I join in the celebration when I can, knowing how hard the struggle must have been.
But when it comes to extolling the ease of life with lupus and not explaining how hard it can be,well, I think this is misleading and probably upsetting to more than just me. First, there is no cure for lupus (except what Our Lord might choose to bring), people with lupus are more likely to “get through” flares (periods when the disease is active) than experience a cure, and the absence of flare does not mean there is the absence of lupus.
Second, lupus is very stealthy. Even at times when we might feel fairly good, “the wolf” can be working inside. Living with lupus requires constant vigilance, regular monitoring by our medical teams, and the understanding that we need to take good care throughout.
Third, I happen to believe that lupus patients would rather learn much more realistic information that be fed only “positive” things. That way, they can be better equipped to meet the highs and lows of the lupie life – and be stronger for it.
In my talks and writing, I try to talk about the benefits that have come from my journey with lupus. Indeed, there have been many positive things that I’ve gleaned and many blessings are, no doubt, still to come. But I’ll be the first to say it’s not been an easy road, nor a finite one. Each day presents hard challenges, and I know that I am not alone in this. I do try to focus on good things, uplifting things, loving and lovely things, including the blessings from lupus. But, just as the title of my blog suggests, some days are “good” and some days are “bad.” With good faith, clear eyes, and a determined heart, the “bad days” won’t seem as bad, and the “good days” will be even more blessed.