Hi, I'm new here.

This doesn't sound good and I possibly don't know anything, but here goes.........first and foremost you need to sort out your medical situation, hen your emotional state and then your work life. It sounds like at this particular moment you can't really do that with your girl friend close by. If you are "waking up together" its not clear to me why you are doing the laundry, cleaning and cooking on your own? SS well-controlled and understood by you is not a barrier to relationships, but it doesnt sound to me like you have it either controlled or understood fully. If you cant get the support you need to do that 1st it may be time to take a break and concentrate on yourself. I hope this isnt sounding harsh - I don't mean to be, but an undertanding and supportive partner (iif you have one) is crucial in any illness.

Hi Rainbowchick, sorry you are going through this. I think autoimmune diseases are hard for our partners and significant others to understand sometimes because it's not always something you can see. I had a 2 year bout of weird symptoms when I was first diagnosed (hair loss, joint pain, neuropathy) and it drove me crazy. My husband would say the same things your gf does-why not be happy? But they just don't understand. I'm hoping you can get back on the meds ASAP because that is the first step. Once you have insurance (look into options like Medicaid if you're in the US even if you don't think you qualify but I hope you get that job you applied for ) maybe take your gf with you to an appointment so your doctor can explain and give her some literature. Your gf needs to know that SS is a chronic inflammatory disease that can be managed and that there is light at the end of the tunnel but there will be bumps along the way. Good luck!!

Hi Rainbowchick--

I agree that you've got to take care of your health first, and part of that means going to doc or hospital when you need to go. Living in fear of someone else's reactions is a soul- and health-crushing way to live. So go already.

If you are in the States, find a low-income or free clinic. They may help you with a Medicaid application. They may also help you with apps for prescription assistance. Those programs only exist for name-brand meds and they're not as common as they used to be before Obamacare. These clinics are overcrowded and you'll have long wait periods so take books, hobbies, etc.

Most clinic docs won't be familiar with Sjogren's so it helps to take a copy of your original testing and online links to give docs.

Again, which are you doing ALL the housework??? If there's an in-person support group near you, take your gf to a meeting. If she's got an ounce of compassion she'll come away with more understanding. If she comes away griping about the whining fakers, you're facing a Nguyen decision.

My husband was the same way ....... at first.  I got firm and told him if something was wrong with him (which HAS occurred since my diagnosis) I, as his love mate, would find out everything there is to know about this illness ....and it shows me how uncaring and disrepectful his behavior is. I then cut, pasted, printed letters like yours and other ss sufferers and put them on his desk and asked him to read them. He really did a total turn around. I assume you do all the laundry, cleaning cooking etc because you are not working and your mate is and that is the only way you feel as though you are pulling your weight. Each day, get up, stretch, have a cup of coffee/tea and determine priority.. Laundry? cleaning? Do what you can  til you wear out, then rest. Make easy meals - crock pot, sandwiches etc.  I dont know where you live, but Social Security Disablily includes Sjogrens Syndrome as a disability in the US.  I don't have it because I'm fortunate enough to have a financially secure, supportive husband. You may be able to hold a flexible part-time job but its tough because you never know when it will be a good day or bad day. I have good days and bad days. I used to run 3 miles a day the SS struck. Now, depending on good or bad day, I try to walk 1/2 up to 2 miles 3 days a week. Yoga has saved my life... pain, energy, and mental strength. You should get on at least Plaquenil, Vit C and D. I quit gluten, sugar and dairy - absolutely helped. Try to get outside at least an hour a day, but not in direct sun.... or if in sun - sunscreen hat and cover skin. Drink lots of water throughout day - but just sip, because at times you will be thirsty no matter what and gulping tons of water won't help.  Gargle daily with coconut oil to moisturize your mouth and spit out in trash (don't clog sinks or sewers). Now, copy your letter and this and/or all responses - give to your g/f and start a  necessary, uncomfortable conversation. YOU are not the one that is being harmful to relationship, she is.

RBC,

Wow. I am sorry that you are going through this. Can I just say that SS is a challenging journey for those of us with supportive partners. If your partner is not supportive now, that is going to be difficult to manage with chronic illness. 

I would focus on getting yourself and your health managed to the best of your ability. If your partner is on board & really cares for you, she will be supportive, loving and HELPFUL! You should not have to worry about telling your partner that your illness is getting worse. Actually, she should be able to see this anyway.

Having a partner that is not understanding or supportive will just bring you down more. It is not what you need. There is a great book (The Sjogren's Book by Dr. Daniel Wallace)..you might purchase & have her look at with/beside you. Perhaps she does not realize how involved SS is.

I wish you luck in getting the treatment you need and working out your relationship issues.

Take Care.

SjoDry