Why I'm Talking About My Life With Sjögren's Syndrome This April


April is Sjögren’s Syndrome Awareness Month.

Sjögren’s is an autoimmune disorder that attacks the secretion glands in your body, but Sjögren’s is more than just the occasional dry eye or mouth.

I was diagnosed with Sjögren’s at the age of 22; the same year I was also diagnosed with Hashimoto’s thyroiditis and fibromyalgia. I have been fighting chronic Lyme disease and unspecified hypothyroidism since the age of 18 and chronic migraines since the age of 4. Growing up playing basketball, softball, soccer and field hockey (which I played competitively at the collegiate level and now coach for my high school alma mater), I was always on the move. Suddenly that all came to a halt and now I deal with a different reality.

Sjögren’s is an autoimmune disease, meaning that the body is attacking the healthy cells in the body, causing more issues than not. Not only does it cause severe keratoconjunctivitis sicca (dry eyes) and xerostomia (dry mouth), Sjögren’s can also cause dysfunction in other organs, such as the GI tract, kidneys, blood vessels, liver, lungs, pancreas and nervous system. It can cause chronic myalgia, severe inflammation in joints and fatigue and can also contribute to mental disorders such as anxiety and depression.

For those affected by Sjögren’s, most common over-the-counter lubricating eye drops do not relieve the dry, gritty pain that Sjögren’s causes. Vaginal dryness is also caused by Sjögren’s, which over-the-counter lubricants do not relieve. Not only does vaginal dryness effect one’s sex life because of unpleasant and painful intercourse, but it can also cause regular yeast and/or bacterial infections.

Imagine waking up with heavy chains weighing you down every day, dark circles so dark that even the best high end concealer won’t hide. Most days it’s impossible to get out of bed as a result of the widespread pain. Showering can be exhausting and dry shampoo will become your best friend.

Imagine eyes so dry that your lids stick to your eyes. Eyes so dry you develop ulcers on your eye due the use of contact lenses.

Imagine a mouth so dry that your tongue is covered with a white film and swallowing becomes difficult because of the lack of salvia. No matter the amount of fluids ingested, your mouth consistently stays dry, causing excessive thirst and, in many cases, tooth decay.

Sjögren’s may have changed me, but that is not necessarily a negative thing. I know I am the strongest I have ever been. Being in my 20s and battling chronic illnesses, each day is a struggle. No day is the same, but I keep fighting. Because of Sjögren’s I have learned to become a professional liar. I can fake a smile better than most, and I have mastered hiding the pain behind my eyes. Sjögren’s has yet to stop me; I still work full-time as a phlebotomist and coach field hockey year-round.

This is my life. This is what I have learned to deal with. No amount of sleep will “cure me.” I hurt, my joints swell and something as simple as applying pressure to a gauze pad or tying a tourniquet causes extreme pain to flood over me which has put me in tears at work. Whether I am having a low pain day or a full blown flare-up, I push myself past the point that most people would give up. I keep fighting and I am chronically kicking Sjögren’s ass.

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Lead photos via Sjögren’s Syndrome Foundation Facebook page.

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