Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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I dont want to hear it

angiern2010
angiern2010
Hello all! I recently went to Mayo Clinic, Jacksonville and found a wonderful rheumatologist. It was very well worth the trip just in case anyone else is considering going. But that really is not what this post...or maybe rant...is about. I have two best friends. I have been friends with each of them for over 20 years. Neither live near me but I usually manage to see them a couple of times a year. One of them even accompanied me to my trip to Mayo a couple of weeks ago. Here's the issue. I have a partner of 5 years who is not the most understanding about much of anything. I am a RN but I haven't worked in the past 10 months because of my illnesses. I have always been extremely independent and always prided myself on being extremely dependable. It has been horribly difficult for me to not work and be dependent on my partner. The longer this situation continues, the more distant my partner becomes (including a vacation to California in a few weeks without me). When I have talked to my friends about how upsetting all of this is (not working, recent diagnoses and my partner's antics) both of their responses are just to leave my partner. When I try to explain that I dont know how I would make it financially (and I have a 12 year old son) they both say "You will be fine!!" "You've always been super independent!" When I tell them yes but this is completely different. I DO NOT trust my body any longer, they hear none of it. I have found myself ignoring their calls this past week because I feel as though they don't understand
How do I get thru to them that things are different now?
joham
joham
I know exactly how you feel because I have just been through my worst flare up ever that started after a couple of sunny days during which I was wearing tube tops and shorts(how stupid of me).It finally got to me that I CANNOT ignore the uv because my body is now extremely sensitive to it.Anyways coming back to the topic.Let me say this straight.I just don't think you can get through to anyone that doesn't know the pain of an autoimmune disease to communicate about it or to have them understand.I have also been trying hard to have at least my closest family understand and I sort of succeeded with my mom and my husbdand and my two small kids.They know I have my better and worse days and they are pretty cooperative and I am very happy to see this is all going In the right direction.Unfortunately it took over a year of me explaining things to everyone and it still often happens that they just cant accept my condition.On the other hand I also became much more understaning of other peoples needs and especially my childrens emotional needs which I believe is a great thing.Now that I don't work we have lots of quality time altogether and I try to see the positive things about this disease.Good luck and I hope things will work for you soon
midnighttrain
midnighttrain
It is really hard to get others to accept that although you look the same on the outside, your capacity to do pretty much anything feels extremely reduced. So sorry your SO seems to be responding poorly.

Dealing with a lot of this myself. You want to say to your friends, If I had both my legs cut off, would you understand I can't just up and leave? Because that would actually be easier!!

I don't have any answers for you other than, it truly sucks.
Abotsd
Abotsd
My Drs. don't get it. No explanations. No cures. How can we expect healthy folk to?
MButterfly
MButterfly
I understand where you're coming from more than you know.
I'm sorry that your friends don't understand. I wish there was some way to make them understand...but, there just isn't.
When I got sick...really sick...I had 1 friend out of what I thought was about 25 friends who truly understood. You know why? She had an autoimmune disease too.
What you need now isn't understanding - it's support.
I found it in very few people. But, where ever you find it...latch on to it and treasure it.
I wish you luck.
MButterfly
MButterfly
Joham - Don't beat yourself up...I made the same mistake. I think we all tend to do that until we realize just how serious it is. And, even then, we sometimes need a reminder. After all we want to be normal so badly, right?
Abotsd
Abotsd
It's very hard to understand. I have it, and don't understand what's happening to me. Now, with the heat on, some nights and mornings, I'm drier than ever. Skin, throat, eyes (am using the new drops, EIItra I think. Much better than Restasis. Still, joints, Mouth......it's a hell of a thing.

Remember, boys grow up and help their Mamas. My son is my $ support, with help from husband and brother. It is costly to be ill and I am very sorry you cannot work anymore. Dependency is hard to take. It's not our fault. I think I'd be terrible, if my husband was the sick one. Better, this way.
KYork
KYork
I just got diagnosed with SJS, but it explains all the issues I have had for the last couple years. I feel I am lucky that my husband of 33years seems to understand and believe that my issues are real. Lately a very good friend has been calling me "a Hypochondriac" and even told other people the same about me. I am so hurt by this name calling. For one I wish I was at this point because then it wouldn't be real. Anyway, I haven't found a way to make them understand this is all very real. Do you think if you had your partner read some of the post on this site they might see that many other people are going through some similar issues? It might help them understand and start changing the way they treat you. It is just a thought. I understand how just leaving isn't always an option.