Sjogren's Syndrome Support


Does anyone else feel guilty about asking for or needing help all the time? I have a very hard time asking for help. When my husband and I talk about going somewhere I am always thinking about how much easier it would be for him to go without me. I also usually feel like he would have more fun without having to leave places early or get there late because it takes me more time to get ready and I wear out faster than everyone else.

Just wondering how you cope with these feelings.

Yes I feel like that, all the time… I have a very strict routine , rinse mouth brush teeth , take some supplements, clean eyes, get gum or candies ,eye drops , glasses to block wind… Ect ect

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I think it's part of being a woman! Especially being a Mum- there's always something to feel guilty about.... If it wasn't about asking for help I'm sure you'd fine something else to feel bad about- you can't sew like someone you know, cook like someone, dress as nicely, keep the garden as nice, hold down a full-time job as well as raise 20 immaculate, polite children.... Life's too short! Sorry if this is too flippant, but you get a sick sense of humour too when the rest of you's never healthy!!

Been feeling this way for many years,…could not keep up and people asking why I can’t keep up as far back as my 20s… Now that I know…I was not that wife, daughter, mother people were thinking.I am looked at by people saying they are sorry and wishing they did not judge so harshly. How would or could of known. I wonder if they know the guilt is still on me I feel…I don’t know , genetics can really throw ya for a loop. Maren

If you or anyone received this please let me know I am doing this right? New to the group, Thanks Maren

Yes, this is the right way to respond to a discussion.

Maren said:

If you or anyone received this please let me know I am doing this right? New to the group, Thanks Maren

Thanks for the replies. It is good to know I am not alone in feeling this way. I used to feel like I was at least contributing to my family more, but now I feel like I take more than I can give.

Yes. Its always in the back of my mind. We have to remember that at any given moment people we know can be in a car accident, be diagnosed with something themselves, etc. We would be there for the people we love. We just have to get used to the idea of accepting that same feeling back.

There are times where SS does get in the way. Its beyond annoying and disappointing. I understand that feeling all too well. A big part of this is keeping open communication about how we are feeling. And give them open room to talk about how they feel too. This thing of ours calls for constant adjustment but you do get used to it.

Yes, it is so hard to have a disease run my life. Fatigue is something normals don’t understand.
Women twice my age can run circles around me. My husband is loving and patient but it has to where lon him. It certainly driving me crazy. It’s been 7 years and it feels like 50.

For many years I ‘worked’ as a volunteer, food banks was my last volunteer job. Now, I’m the one who needs the help of a, or maybe more, volunteers. I ‘should’ have the mind set/attitude of, 1) I’m older, a senior, 2) I’m disabled, 3) Sjogren’s. BUT, my guilt is, haven been a giver for so lo be a receiver of ‘services’ because of my needs, to have to ask for help instead of yes, I can help, rather humiliatating. Then, on top of everything, many who I ask for help, infuriating, but coping with my anger, not now, why later, don’t have the time. Or evasion, why not a direct answer, if they can’t, they just say ‘no’.