tl;dr – Some personal thoughts on living with lupus.
Okay. This one is something very personal. Maybe you are interested. I was diagnosed with systemic lupus erythematosus (SLE) in 2016, the day Olivia told me that I am going to be a father. So at least there were good news and bad news that day. Before you go “poor Fab” in your head: It is okay.1 There are people way worse than my mild SLE. I manage. Sure, your own suffering is the biggest suffering you know, but still I feel lucky — life is suffering I heard. Why am I writing this down? I am working on a project about it. So I a looking a lot into it and because I was told writing things down helps to digest them. So here we go.
I think the SLE was there long before the diagnosis and the butterfly rash that came in 2016. As an adolescent I already had frequent inflammatory diseases and some (allegedly) viral arthritis at the age of 14 after some mosquito bites from Colombia for a year. This kept on in my twenties with spotted hair loss and other inflammatory diseases.
Being young and in Berlin in the 2000s did not help. Drinking, smoking and other things with techno parties at the Panorama Bar. It was a rave. Let’s say my lifestyle from the mid-1990s till the mid-2010s was a little too wild for having such an illness.2
The SLE got worse over the years. I think my peak was around 2021/2022 where other things came together that were very stressful. What helped to get me out of this?
Due to the meds I am taking I stopped drinking alcohol. This is great. I have been sober for more or less 1250 days. I stopped smoking. Maybe 1000 days without a cigarette? This is way harder than drinking. I do sports. This is my temple. I have been a student at the Kung Fu Academy Berlin since 2008. This already helped me channel energy away from partying to something more productive. When I have fatigue days this is what gets me up and running again. It is wired in a way that I can’t get out of bed to do nearly anything, but when I make it into the “classroom” it gets better. My head clears and I feel happy afterwards. Food is also a big thing. I sometimes do phases without sugar. Without milk products. Without gluten. I take Vitamin D every day. I use sunscreen every day. And of course my meds.
Let me put a rhetorical question here to keep this floating: How is it to live with that?3 Well, I have to be more conscious about what I do. I can’t go to the beach and have a sunny day. (I can, but then I have a bad day or several afterwards.) I have to plan with the energy I have. Of course you have to do that without lupus as well, but exhausting myself can throw me into a flare, which is bad. I have to stay away from stress as best as possible, because this also ends in a flare. And I have to watch out for infections. The SLE is actually my immune system going very strong — too strong — and attacking my body. This is where the immunosuppressiva come in. They try to lower my system. Therefore it is more likely that I catch a cold and all those other annoying things you can get from the Kita. My rule of thumb is: Don’t eat the kid’s plate. They eventually sneeze on it. And don’t get me started on pink eye. I just have to see the sign that some kid had it and it already itches.
My biggest problem currently is insomnia. This is why I start writing blog posts at 4 in the morning. Full circle.