Busy I have been – in fact, I’m about to head out again- but I’m not so time-crunched that I would bypass the chance to talk about what basically drives this blog (and, thereby, myself). Sept 9th through 15th is National Invisible Chronic Illness Awareness Week, which is a time to recognize the unrecognized: those who live with health conditions and diseases whose symptoms are too quiet to get ample attention, and yet are just as draining, just as painful, and every bit as live-changing as those who have illnesses that are empathized with more freely. Knowing that some symptoms and signs of ill health are more obvious than others does not a justify ignorance.
I have autoimmune arthritis as a result of Sjogren’s syndrome. While my pain, dry eyes and mouth are not severe enough to keep my from working or going to grad school, they still require constant attention. I am not allowed to forget I have this. For instance, if I for some reason forget to take my pilocarpine, a saliva-stimulating agent, my thoat will start to feel as parched as the desert. So if I don’t have something to drink or gum or hard candy nearby, sometimes I feel like I’ll choke to death. And yet I keep reading articles about Sjogren’s written by people from news sources (that shall remain unnamed) who clearly don’t have a clue what it’s like to have this condition. I have read things such as, “it’s not life-threatening,” that it’s a ” mild condition,” and my all-time favorite- it’s “more an annoyance than genuine illness.” Yes, someone actually put that drivel to print.
So Primary Sjogren’s syndrome is not nearly as awful to have as it’s autoimmune connective tissue disease cousins, Lupus and Rheumatoid Arthritis. It usually doesn’t require prescriptions of expensive biologic drugs such as methotrexate; it doesn’t require its sufferers to get infusion treatments in the hospital or require them to walk with a limp or distort the bones and joints of their fingers or toes. But it can be found as a secondary diagnosis to these illnesses (Secondary Sjogren’s syndrome), and it can lead to complications such as conjunctivitis, costrocondritis, and periodontal disease. And, rarely, people diagnosed with Sjogren’s can develop lymphoma, a type of cancer. So in that sense, I don’t believe my illness should just be so casually lumped into that “less serious illness” category. I can assure you, I am very serious about it.
And let’s not forget my random digestive complaints, which resulted in continually inconclusive testing. I only know that I have a hiatal hernia and imaging offered that the region around my terminal ilieum was “cloudy” at best. I get jabs of pain all the time. I will never forget how badly I was treated by that emergency medicine doctor at NYU when I believed I might have had appendicitis – or how he made fun of me. Hey, he even laughed at my predicament – for a couple minutes got actual pleasure out of mocking my completely legitimate complaints.
And it miiiiight have been a little easier to deal with had the doctor been a little less upbeat.
Okay, now I’m flat out angry, and this was over two years ago! The point is, you don’t forget when you become the unwilling victim of an invisible illness stigma attack. And it is for this reason that I write and educate myself and advocate for people like us.
Any more evidence of injustice I encounter only adds more fuel, more ammunition, and more drive to my goal to broaden the mindset of even one person.
Please visit InvisibleIllnessweek.com
Photo sources: invisibleillnessweek.com, chan4chan.com (Via Google Images)