Faces of Sjogren's: Joe's JourneyWhen I was diagnosed with Sjögren's, my first thought was…
"I'm a man, I cannot have this." I represent one of the 10% of men who suffer from Sjogren’s. I am 47 and was diagnosed with Sjogren’s at 44. It took about 10 years from onset of dry eye symptoms in 1999 to get diagnosed. As a man with a predominately women's disease, I feel isolated and alone.
Sjögren’s is not just a dry eyes and dry mouth disease, although I really wish it was. The fatigue, joint and nerve pain can be intense at times. I try not to complain but it is so difficult. I am currently on disability from work but hope I can get back to work.
I still do not have control of my Sjögren’s, but I am not going to let this disease beat me. I am going to try to do my best at fighting this disease.
I am uncertain about my future and worry what it will bring, but worrying will just cause me stress and thus more flares. I need to take better care of myself so I can help my family in whatever capacity I can. I really would like to cry at times, but I cannot let my wife and kids see me this way. I am thankful that my family is healthy and that none of them have to go through this. However in a way, they are going through this as well because they are seeing what it is doing to me.
Sjögren’s has taught me to value life and to appreciate what I have. There are so many others who are suffering worse than me. I have learned that I will never be normal again because of this disease. I need to discover my new normal and get used to it.
I am going to be strong.