I have Sjogren’s

Huh?

Sjogren’s (SHOW-grins) affects 3 to 4 million Americans, 90% of whom are women, most of whom remain undiagnosed or misdiagnosed.  Sjogren’s is a serious autoimmune disease that can impact every organ and system in the body.  Sjogren’s is as common as rheumatoid arthritis and about 3 times as common as lupus, two more well-known autoimmune diseases.  Autoimmune disease occurs when your immune cells, which are supposed to protect you, attack you.

In Sjogren’s, immune cells attack many parts of the body, including moisture-producing glands, of which there are many.  Sjogren’s presents differently in different people, but if you know what to look for, it’s easy to spot.  Sjogren’s is commonly and misleadingly thought of as “just dry eyes and dry mouth”, but Sjogren’s is more than “just dryness”.  Sjogren’s is a systemic disease that causes nervous system dysfunction, cognitive impairment (brain fog), widespread pain, fatigue, and organ damage. 

Sjogren’s also is a neglected disease and those of us living with it should not have to forfeit control of our lives, nor fight just to get appropriate medical care.  Sjogren’s is frequently misdiagnosed as fibromyalgia.  Symptoms are often dismissed as irritable bowel syndrome (IBS), psychosomatic disorders, and/or other vague conditions such as functional neurological disorder (FND).  These diagnoses mean little other than, “We don’t understand why you have all these scattered problems or how to fix it, so, just live with it”.  

Sjogren’s is not a syndrome, it is a well-characterized autoimmune disease.  Sjogren’s is not rare, is not benign, and is not a nuisance dryness disease.  Sjogren’s is an invisible illness with costly and often catastrophic consequences.  Yet research and education are so lacking and myths so abundant that people with Sjogren’s have difficulty getting adequate medical care.  The neglect is so dire that the Sjogren’s Foundation posts survival tips on its website, “If you feel your Sjogren’s symptoms are dismissed by a physician, help educate your physician and/or find another physician.”  Why is it our responsibility, as patients, to have to educate our doctors?  And “Be your own advocate. No one knows your body better than you. No one knows your pain better than you. No one knows what makes you happy better than you. You are the expert on you.”  I wish the world believed that I was the expert on me.  The unfortunate reality is that people with Sjogren’s are questioned, doubted, labeled, and dismissed as anxiety-riddled, depressive, hormonal hypochondriacs.  The anxiety, depression, imbalanced hormones, and ever-present, unpredictable, shifting pains are not the cause of Sjogren’s but are caused, at least partially, by Sjogren’s. 

It is appalling that people with Sjogren’s must spend their limited resources learning medical terms and reading medical literature to counter misinformation and advocate for the care they need.

In 2018 a medical doctor disabled by Sjogren’s was compelled to research, assemble, synthesize, and simplify the limited existing scientific data into meaningful tools to use to self-advocate for better medical care of Sjogren’s.  This vast quantity of work amounts to a combined self-help book and a PhD thesis on the diagnosis and management of Sjogren’s, and is a godsend, the Sjogren’s Advocate website.

People with Sjogren’s are the canaries in the coal mine.  Our lack of moist, healthy mucus membranes and healthy skin make us sensitive and vulnerable to our surroundings and what we put in and on our bodies.  Our reactions and sensitivities highlight the ways in which industries cut corners for economic gain at the expense of human health.  My previous articles highlight how the cosmetics and skincare industries exploit consumers for profit and how you can protect yourself. 

My most visible symptom of Sjogren’s was painfully dry, sensitive skin.  Buying and using skincare products was like negotiating a minefield; I never knew what would cause breakouts of hives, rashes, boils, and bruises.  My skin dictated my life and defined me; no makeup, no wool or acrylic clothing, limited exercise, few social outings, no fun…

I hated my skin because I was besieged by messages that defined beauty as looking “young and flawless”.  This messaging came via ads, movies, books, music, and community members, including loved ones.  I waged war against myself, using all kinds of cosmetics that never resulted in healthy skin.  I fought a losing battle against myself, fed my insecurities, wasted time and money, and ignored my reality.  When I turned to doctors for help, I got prescription after prescription for drug after drug to treat symptoms, but no help whatsoever addressing the root cause of my illness.  When I couldn’t distinguish symptoms from side effects while on 6 drugs a day, I finally listened to my body and took matters into my own hands.

It took 10 years of my life actively pursuing a diagnosis to piece together the seemingly disparate symptoms to arrive at Sjogren’s. My doctors were focused on a microscopic view of whatever my current symptom happened to be, rather than taking a holistic, macroscopic approach to diagnosis. 

Meanwhile, I lost my life as I knew it.  The fatigue and cognitive impairment caused by unmanaged Sjogren’s is profound.  The periodic surges of body-wide inflammation wreaked havoc on me physically, mentally, and emotionally.  I was anxious and depressed from all the random and unpredictable symptoms, the constant, yet ever-changing pain, and the continual dismissal from doctors (and friends and family) saying, “Your tests are normal; you’re fine; relax”.  I spent my nights and weekends in a fatigued stupor.  It’s hard to have a life when you might get blindsided by myriad maladies at any time.  I entertained myself at home by using whole foods to make shelf-stable skincare treatments for my skin.  After several months of formulating and applying my solutions, my skin looked totally different.  My family and friends noticed, complimented me, and asked me to formulate bespoke solutions for them.  Searching for a meaningful life that allowed me autonomy, I started my business selling bespoke skincare products.  I figured that if I was so sensitive to skincare ingredients, there had to be other people like me.  I didn’t know how right I was.

There is no cure for Sjogren’s, but there are ways to slow disease progression and treat and manage its manifestations.  I’ve found the following resources useful for addressing Sjogren’s.