Tuesday, October 20, 2015

Sjogren's Syndrome and Men: Resources are Too Few

When 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. -Joe  From Faces of Sjogren's found on the Sjogren's Syndrome Foundation website found here.

Over the past few weeks, I've received a few emails asking for information specific to men with Sjogren's. I'd be happy to oblige with the few resources that I have. If you have additional sources, please let me know and I'll add them to this post. I'd also love to be able to add links to Sjogren's blogs written by men. Do you know of any? Send me the link. If you're a male with Sjogren's? Consider writing one!

At this point, I only have two male-focused resources to pass along: 

The Sjogren's Syndrome Foundation's newsletter The Moisture Seekers contained the following useful information:
Are you a man living with Sjogren's? You are not alone! 
Please contact the Sjogren's Syndrome Foundation (SSF) at 800-475-6473 or send an email to tms@sjogrens.org to sign up to receive special mailings, focus group information and notices about teleconference support group calls for "Men with Sjogren's".  
We know you will find the SSF's Men with Sjogren's support group a great resource for interacting and exchanging helpful coping techniques with other men who live with Sjogren's --- just like you!  
Sign up today!
A  group with the title "Sjogren's Syndrome For Men" can be found on Facebook here. This information about the group:
I am your group founder and administrator. My name is Bill Simpson. As I am from the Buffalo NY area and as a diehard Bills fan... my friends all call me "Buffalo Bill"
This is a group dedicated to men who suffer from Sjogren's Syndrome.  
It is open to men only. We are open to all men who suffer from this disease, no matter your race, religion, nationality, sexual inclinations, or political ideals. 
RULES: We will not tolerate profanity, sexist or racist comments, name calling, political or religious debates, rudeness or other forms of bad manners.  
No sexual comments (except for issues related to the disease itself) No coarse humor. Let's keep it G Rated. 
I will delete posts or comments which violate the rules.
Habitual offenders will be removed from the group. 
We WILL however encourage exchanges about our common interests related to Sjogrens. 
Everything from diet, cooking and recipes, exercise, medications, music, books or whatever.
And if the discussions go towards boxing, football or other sports... well... that's ok too. 
We are here to exhort and encourage each other, and to exchange and share information related to this disease. 
We shall fellowship as gentlemen.
Keep in mind that with a few exceptions, information and links about Sjogren's Syndrome and other autoimmune information applies to men and women, so take a look at my left sidebar using a non-mobile device for links to information, websites, and blogs. The Sjogren's World Forums has male participants as well as female. Check it out. 

1 comment:

Anonymous said...

I am a man with Sjogrens. The post by Joe is very accurate. You feel scared and alone. You have never heard of this disease and have no idea what is happening to your health. It is devastating. It threatens your ability to take care of your family. It makes you feel less than a man. It makes you question your hopes and dreams, the future, your life.
I try to be strong and put on a brave face for me family. But they know I am struggling. You can't hide it.
We hope and pray for better days.