I was once asked by a well-meaning but ill-informed gentleman if lupus causes pain. Restraining my initial urge to laugh hysterically, I calmly confirmed that, yes, lupus is indeed painful. It’s something I don’t like to talk about. As a matter of fact, I hesitated for a long time before writing this post. I worried that the topic might come across as whining, rather than as presenting information about systemic lupus. But the fact is that pain is an intrinsic part of lupus. Most lupus patients experience chronic, grinding, wearing pain. It’s just part of our daily life. Because we want to avoid sounding like whiners, we try to hide the pain, pretend it’s not there, or make light of it. It is therefore understandable that even many close friends and family members “don’t get it.”
Lupus hurts. It hurts a lot. If you’ve ever sprained or strained a joint, you know what kind of pain accompanies injured soft tissue. The pain from a sprain/strain comes largely from the inflammation that occurs around the site of injury. The pain associated with such inflammation is the body’s way of saying, “Ok, moron. Stop trying to run with a sprained ankle!” Inflammation is supposed to help the joint to heal and prevent the injured person from injuring it further. It makes sense, as uncomfortable as it might be at the time.
Unfortunately, those of us with lupus have inflammation all of the time, unless or until our disease goes into remission. Even worse, the inflammation is systemic, rather than localized on a single site of injury. So if you think back to the pain of your sprain, and imagine that every single joint in your body hurts that much most of the time… well, then you start to get a picture for what everyday life is for lupus patients. It hurts. And don’t forget that there are non-traditional joints, like the ribs and their supporting connective tissue, which can also be inflamed.
Unfortunately, pain caused by lupus isn’t confined to joints. Lupus arthritis is a very common symptom of systemic lupus, but the fun doesn’t stop there. Since every organ and system can be impacted by lupus, there are an awful lot of ways the disease can cause pain. Like everything else about lupus, the level of pain on any given day is unpredictable and may vary significantly. So there are good days, but there are also very, very bad days. We don’t get to pick which days are good and which days are bad. While it is frustrating for those around us to deal with the unpredictable nature of lupus, please know that it’s even more frustrating for us. We don’t like canceling plans at the last minute, suddenly changing our minds, etc. But we are at the mercy of a disease that is not particularly merciful.
As I said at the beginning of this post, I am not soliciting for pity. I don't like complaining, I don’t like people to feel sorry for me, and I really don’t like to be held up as either a positive or a negative example for others. It bothers me when people say that I must be a strong person to work through constant health problems. The fact is, I don’t have a choice. I have lupus. I am not, unfortunately, independently wealthy. Therefore, I am sick, I am in pain, and I must work anyway. It’s that simple.