On a good day, living with a disease as unpredictable as lupus is energising because it reminds you to live each moment intently. This might mean slowing down and taking the time to savor every minute. It might also create a sense of urgency, the need to rush into anything which appeals to you because you are conscious of how lucky you are to be able to enjoy it now (and that, as the disease evolves, you might develop physical limitations which prevent you from doing it).
There are bad days though, during which the wolf bares it teeth and dealing with the unknown is straight up scary.
As mentioned in previous posts, several advocates argue that lupus awareness, knowledge and treatment lag behind other diseases… There’s a sense of having been left behind – when most of the questions you come up with remain unanswered, when most websites or flyers you come across describe your disease as ‘mysterious’.
Stats and figures suddenly seem random or ironic – I, as a woman of African descent, happen to form part of the most affected group, the group which develops symptoms at a younger age, the group which is most likely to develop life-threatening conditions. Why this prevalence among colored women? No explanation.
You notice specific patterns in how your body responds to the illness, read plenty of testimonials from other patients who are going through the same thing and yet realise that there is not one single study which backs these observations scientifically.
You wake up to your body doing something new or weird and you dive deep down the spiral of overthinking – Is it linked to lupus or not? Is it a side effect of my medication? Should I see the doc or just wait a few days to see if it goes away? When you finally decide to go for medical advice, you realise that you don’t even care about how severe or not that thing is – you just want somebody to explain to you what your body is doing right now. And you feel frustrated, robbed of a sense of ownership, for not being able to understand why your body is behaving in a certain way.
You gulp down facts about the most common life-threatening complications, or cases of death related to lupus because you want to be familiar with the many ways in which your body can end up failing you.
And, and, and… you are still left to answer “Nobody knows for sure” when asked what causes it, and a simple “None” when asked if a cure exists.