Living with a chronic, "invisible" illness

Since I got diagnosed with a chronic condition called Sjögrens Syndrome I am trying to raise awareness for this poorly understood, "invisible disease". Briefly, Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. It is caused by the immune system attacking your own organs. In case of Sjögren's typically the tear and salivary glands are attacked and damaged leading to dry eyes and mouth. However, the disease may also cause the immune system to attack other organs and it can cause profound fatigue, joint pain, nausea, dizziness, headaches, neuropathies and lymphomas.

Sjögren's is a chronic disease and there is no cure at present. It is hard to put in words what it means to live with such a chronic inflammatory disease. One of the biggest challenges for me was to get used to unpredictability of my physical condition: the symptoms listed above and more can flare up suddenly and then disappear completely, making it sometimes difficult to plan. Small disturbances such as lack of sleep or a light cold can now knock me out for several days. Further, the ever-returning symptoms are emotionally draining, as they can cause the perception that there is no progress, no healing.

I have been fortunate to be diagnosed soon after the first symptoms appeared and I have gotten treatment that has helped me to return to a more or less normal life. However, there is no guarantee that my current medication it will continue to work for me. Generally, this disease, like other autoimmune conditions, is characterized by a shocking lack of understanding, despite the large number of people that are affected (4 million Americans according to the Sjögren’s foundation). 90 % of patients are women. My hope is that awareness will eventually increase and more research will lead to faster diagnosis, better treatment and maybe even prevention. For more information, I recommend the official website of the Sjögrens Syndrome Foundation.