Are you sick of hearing about Sjogren’s Syndrome?
The topic came up this week on Christine Molloy’s Facebook page “Thoughts and Ramblings on Life, Love and Health”. Christine has a blog: http://www.christinemolloy.com She celebrated her 6th anniversary of beginning the blog by posting the link to her very first blog post again this week. Over the years she has posted about Sjogren’s but her blog is not exclusively about the syndrome. At the outset she made a conscious decision for it not to be. She stated she was more than Sjogren’s, so she intended her blog to be more than just that too.
Likewise I made a similar decision about my blog when I began. That is why I have a topic bar underneath my blog title, so people can chose to read just the Sjogren’s posts or random topics, just memoir or poems, or whichever combo thereof.
It is a common concern of most Sjogren’s patients (as I am sure is the same with sufferers of any other chronic illness) to not to talk about their illness all of the time. We are quite aware other people will get sick of hearing about it, because guess what? So do we.
Unfortunately it is not an easy ailment for patients to ignore since symptoms frequently affect a person from head to toe, literally. It is chronic and without cure. There is no treatment specific to Sjogren’s; what treatments are available are often hit and miss.Relentlessly day after day, Sjogren’s is exhausting.
Even the minority of Sjogren’s patients who are not affected initially by overwhelming fatigue become tired because of the illness being so invasive of time, energy and finances. Fatigue is not just a physical symptom of the disease itself and the chronic flu-like pain so many suffer with, but also becomes a side effect of what it takes to manage the disease. A few years ago a chronic disease lifestyle study was done which showed that Sjogren’s was on par with Multiple Sclerosis as far as the patients’ day to day quality of life.
While admittedly we get tired of not just hearing about Sjogren’s but also living with it, many of us do feel it is critical to raise awareness of the disease, as well as reach out to support others, especially those who may be new to the diagnosis, or perhaps still seeking one. So for that reason I will continue to post about Sjogren’s from time to time, not just during awareness month but whenever the mood strikes me.
Am I doing it for attention, pity, sympathy, or to play the “my disease / symptoms are worse than yours” game? Absolutely not.
I do it to educate, so perhaps others who may be struggling with symptoms may have a shorter road to diagnosis and treatment than I had. I also do it in hope of creating better understanding not just of the medical aspects of Sjogren’s, but for the challenges that come along with living with the myriad of symptoms. I do it not just for the Sjogren’s patients but also for their loved ones, so that they too may have a better understanding of the syndrome, thus in turn the potential for greater patience and compassion. I do it because telling my story makes me feel better, and maybe just maybe, my story might do the same for you.