Reflecting Upon the Roots of My Cause/National Invisible Chronic Illness Awareness Week 2013

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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.

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Hmm…

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)

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7 responses »

  1. Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! – Cameron

  2. Hi I want to thank you for your blogs. I just came across your blogs this morning as I struggle to get any sleep because of my autoimmune condition as well. I too am fed up with doctors not knowing and simply not taking the time to do research. I too am young and feeling so frustrated. I don’t know any one else my age struggling with an autoimmune…so thank you for your blogs. I knew that I couldn’t have been the only young person struggling w this…

    • I’m so glad I was able to help, Amy.

      This lack of understanding on the part of medical professionals seems to irk autoimmune disease patients more than anything else. Public health efforts have been narrowly focused on lifestyle conditions (cancer, heart disease, AIDS/HIV, etc.) for many years, and most are preventable. Not so with autoimmune disease. I think the real reason patients like us get put on the back burner has to do with pure uncertainty on the part of doctors. In a sense, some are afraid to treat us. There are so many autoimmune conditions in existence that Johns Hopkins University created an entire center dedicated to researching them. That means doctors must continually follow the research in order to be effective. Some of them don’t have the time. Others just have deplorable bedside manners. Only in the last year or so have admissions committees decided to include evidence of empathy as a factor in med school admissions. And yet those unsympathetic bad apples practicing medicine give those who genuinely DO want to help a bad name. I know because I’ve been fortune enough to meet some of the good ones myself.

      But the attitudes towards autoimmune patients has got to change. It feels similar to how psychiatrists and therapists opt out of treating patients with certain hard to treat mental illnesses. We are not “complaining” if we simply want answers. We are not “malingerers” because our symptoms can’t easily be explained. And guess what? We’re increasing in number everyday. If someone doesn’t have an autoimmune disease themselves, I bet they know someone who does.

      Can I ask what condition you were diagnosed with?

      • Yes I agree completely. And I was dx with rheumatoid arthritis a few years ago and my new rheumatologist recently told me I no longer have rheumatoid. That it is now sjogrens. But I feel like she hasn’t told me much about it except for the obvious markers of dry eyes and dry mouth. I have flare ups and recently feeling symptoms of carpal tunnel which has progressively gotten worse even with an anti inflammatory. I had no idea about there being primary or secondary sjogrens up until very recently.

  3. That’s interesting having a diagnosis taken away like that. It’s been almost 3 years since my diagnosis, and I’m still getting used to all that goes w/ Sjogren’s. Are you on any other medications right now? I tried Advil, Tylenol, double doses of Aleve…none of that touched my pain. I’m on Plaquenil, and I’ve been told it’s the safest drug out there for moderate-severe inflammatory arthritis. I’m also on Restasis (steroid eyedrops), tramadol (for breakthrough pain), and pilocarpine (for dry mouth). This has been my life, and it’s totally doable. Other than that, I suggest you educate yourself as much as possible. Stress WILL cause flare-ups, so the more you know the better prepared you will be.

    If you haven’t already heard, there’s a great advocacy organization out there, the International Foundation for Autoimmune Arthritis (IFAA), that is doing everything (and I mean EVERYTHING) in its power to spread the word about diseases like Sjogren’s and RA. One of their main goals is to show the public how to differentiate between osteoarthritis (the kind that comes with age and CAN be treated with regular OTC medications) and the kind that stems from certain connective tissue disorders. I’ve been volunteering for them pretty much since I started having joint pain. I’m going to meet up with the co-founders and some other volunteers in Las Vegas this June. Look for a new post on that. But anyway, it’s a great way to learn about your illness from the perspective of real insiders – the patients! http://www.ifautoimmunearthritis.org/ [I’m the second to last girl on the right in that B&W pic :-)]

    There is truly no other nonprofit like it!

    I also love to frequent the forums at Sjogren’s World http://www.sjsworld.org/. I haven’t found a better place to find answers for even the strangest of symptoms than their message forum.

    And, of course, there’s the Sjogren’s Syndrome Foundation https://www.sjogrens.org/.

    Good luck, and keep educated!

    • I’m also on plaquenil and nabumetone but I just don’t feel the anti inflammatory helping much. And thank you for the info I will definitely check out these sites!!

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