My immediate family members were the first persons to be informed of my lupus and for several weeks following the diagnosis, I did not talk about it to the rest of my family/friends. Unaware of what was going on, they expected me to carry on as usual – demanding that I do things I could no longer afford to, talking about how much of a fool I was for missing out a specific event (not knowing I was too sick to leave the house on that day), thinking that “I’m not feeling okay today” meant I probably caught a cold. Over time, this created a growing sense of resentment and disconnection – I thought they were being self-centered, incomprehensive… It eventually struck me that I was the one being dumb here – how the hell could they possibly guess I was suffering from lupus? How could they know what the disease entails and that I had to make changes to the way I live?
From then on, I took a leap, and during a few days, I contacted the people who are close to me and/or with whom I hang out regularly to talk my disease: telling them what I know about lupus, how it affects me, and how it might change our common habits and the dynamics of our relationships. Regardless of the reactions I received– from sheer indifference to sincere support – this step was incredibly liberating.
My blog was the second big part of “coming out” about this illness and I am overjoyed (and grateful) to see how it opens conversations between me and people who ignore all of this disease, as well as those who are undergoing something similar.
Yet, I’m still working on finding a proper balance when talking about lupus, navigating to find the right content and tone for my message.
To begin with, I’ve noticed that there is a sort of general uneasiness when it comes to talking about diseases. On a few occasions, I casually mentioned my lupus in the during a conversation suddenly felt that I created a sort of discomfort, that it was not the kind of subject which was ‘pleasant’ and that I should not have brought it up at all. Sure, concepts such as “autoimmunity” or “lifelong treatment” are not very glamourous but I sometimes feel that it all stems from the link between illness and death, and the general taboo which surrounds death.
Even when people do want to know about it, I’m not sure about the type of information which I should prioritise. Should I first talk about the broader, medical aspect of it (the immune system, the blood tests, the treatments and so on) or the practical details (such as the symptoms I suffer from, what causes me to flare up, how I had to change my habits etc)? Closely linked to that issue is how and when to switch between talking about my personal experience, to trying to create awareness about the disease as a whole. One such example is when I’m asked how lupus affects my possibility to have children (…). While my initial response would be a truthful “I don’t want to have kids anyway, so that’s not a problem.”, I believe it to be the right opportunity to educate others about how lupus increases the risks of miscarriage or premature delivery and that pregnancy often triggers flares.
On top of that, finding the right words to talk about the severity of lupus is quite tricky. It is important that those around me understand that my case is still mild, that I’m lucky enough to be closely monitored, that I follow a proper treatment and that my last appointment (November 2016) revealed that my organs have not been damaged (woop woop!). Yet, it is equally important to make it clear that lupus can lead to very severe complications (strokes, heart attacks and kidney failures among others), and that deaths from lupus-related complications still occur. When people underestimate the severity of the illness (despite being provided explanations about it) I sometimes feel like the only way to be taken seriously is to dump all form of diplomacy and tact, to cross out any efforts to reassure them, and to bluntly remind them how severe lupus can get. * On a side note: Jokiva, 21-year old woman from New Orleans, does a great job documenting the physical effects of lupus including hair loss and skin rashes http://bit.ly/2ivhLWJ. Coming across her blog kinda shook me and actually forced me to make extra efforts to manage the disease.
In light of the above, and for a whole lot of other reasons, I believe that asking questions are important. This of course varies from one patient to the next, but I’m personally comfortable talking about my illness and don’t regard them as an intrusion to my privacy. They help me to give out more specific and appropriate information and it always warm my heart to know that people are taking the time to understand my condition better.