Over the last little while I’ve been dealing with some rather mysterious recurring health issues – painful swollen patches on my face, swollen lymph nodes, sore joints, fatigue, and brain fog. These all come together at once as a flare-up, and then slowly disappear over time (sometimes days, sometimes weeks). This first happened way back in January 2015 during the first month of my long-anticipated sabbatical. While it wasn’t the way I’d hoped to start my sabbatical, I assumed it was just a weird one-time occurrence and for a while it seemed that was the case. In recent months, however, these flare-ups have been occurring with more regularity. This past semester was incredibly difficult as I spent most of it feeling like crap, and my “summer of reading” didn’t go exactly as planned because of these symptoms (although I still made reading a priority!).
I have seen many different health care professionals since that first flare-up in January 2015, and every test seemed to come back as “inconclusive.” This is incredibly frustrating – you know that something isn’t right, but the official word is that nothing is really wrong either. (on a related note, I highly recommend Maya Dusenbury’s brilliant new book called Doing Harm) This year, however, I’ve been working with quite a great team – my new GP, a rheumatologist, a dermatologist, and a naturopath. Collectively we seem to have figured some things out. It seems like I’m dealing with a rather rare autoinflammatory condition called Sweet’s Syndrome. (Trust me, it is anything but sweet!)
While I’d prefer not to be dealing with this, it is actually really, really encouraging to have a diagnosis, a label, a name. There seems to be a need for a lot more research in to Sweet’s Syndrome (one of the most comprehensive resources I’ve found so far is is a website called Sweet’s Syndrome UK), but just having somewhere to start feels like a bit of a victory.
I’m also delighted to have found Chronically Academic, a resource/community for academics dealing with chronic illness/pain, as well as Spoonie Strength, a resource/community for people trying to manage things like weightlifting with chronic illness. (I’ve just started up kettlebell again with a trainer who is helping me develop a plan that takes in to account the symptoms I’m having and I’m super excited about that!) I mention these sites because I think it is important to be part of a community and to talk about these kinds of conditions – there is so much we don’t know about autoinflammatory and autoimmune diseases, and the more conversations we are having, the better. This is the main reason for this post – not as a plea for sympathy, but instead to talk a bit about what I’m dealing with in the event that maybe one day this information might be helpful to others struggling with similar issues.
I’ve also been talking to family members and it turns out that there are at least 11 people in my family (all related by blood) that have some kind of autoimmune/autoinflammatory disorder. Now this is way outside of the scope of my academic degrees and areas of research expertise, but surely this must have some significance! I’ll be typing up this list to take to my next set of appointments.