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 timeā¦ I have a very strict routine , rinse mouth brush teeth , take some supplements, clean eyes, get gum or candies ,eye drops , glasses to block windā¦ Ect ect
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,ā¦could not keep up and people asking why I canāt keep up as far back as my 20sā¦ Now that I knowā¦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 feelā¦I donāt 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 donāt 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. Itās been 7 years and it feels like 50.
For many years I āworkedā as a volunteer, food banks was my last volunteer job. Now, Iām the one who needs the help of a, or maybe more, volunteers. I āshouldā have the mind set/attitude of, 1) Iām older, a senior, 2) Iām disabled, 3) Sjogrenās. BUT, my guilt is, haven been a giver for so lo be a receiver of āservicesā 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, donāt have the time. Or evasion, why not a direct answer, if they canāt, they just say ānoā.
I know this is an old thread but such a good topic. As time goes, Fibro has layered on top of being a Sjoggie and things have gotten much harder this last year or two.
Funny how we think weāve got it down and then have to learn all over again how to cope.
I totally agree, but I think those same sentiments can relate to many rare conditions. It was only earlier today I was replying to a post in another community and posted something very similar to:
I think itās often a case of us wanting āNormalā and fooling ourselves that we can do āNormalā, only to then come crashing back to earth and the reality that we canāt or we canāt ALWAYS do normal. That variability can be so infuriating. I may do ānormalā today, but thereās absolutely no guarantee tomorrow will be anything like āNormalā. Some people would say āWell, it keeps life interestingā¦ā but the management involved to do āNormalā in itself, can be SO exhausting.
I can assure you, you are not alone on that one.
P.S. If you ever find that thing āNormalā, can you PLEASE tell me how 
Merl from the Modsupport Team
I wouldnāt know normal if it walked up and introduced itself. Lol
But yeahā¦ that feeling that we got this down and know how to manage only to have something else odd happen is so tiring. I use lots of tools to stay positive but some days its just very heavy.
My husband gets frustrated if I donāt tell him whats going on. Between SS and Fibro, its Always something. I would be constantly paying attention to the issues and constantly talking about it if I did. Or I plain forget if Iāve mentioned something or not.
I keep saying āYea, Iām OKā and my wife looks at me with THAT look, she knows. Sheās the only person who can read like a book, damn it. I might as well have a big red neon sign above my head. But then repeatedly saying āYea, I feel awfulā getās really old, really quick, so I (Try to) put on that āHappyā mask, āyea, Iām OKā others may accept my answer. But the wife, she tells me directly āBullshit, look at you damn eyes, you look bloody awfulā¦Whatās going on, whatās happening??ā
Ohh I hate it when I look the way I feel
Merl from the Modsupport Team
Oh! I know that one! I hate it too. I feel very defeated when I hit a point that I canāt hide how Iām feeling.
I get that they want to know but not showing it is part of having the strength to get through it, in a weird sort of way.
I think ādefeatedā is the right word. I try, everyday, not to show it, but if others can identify it, then Iām having a REAL bad day. I mean somewhere in the recesses of my mind I know it, I just donāt want to acknowledge it. Having others acknowledge and identify something isnāt right, sort of makes me feel guilty in a way, sometimes even apologetic, as if I have some sort of control over it all. Hell, donāt I wish I did have control.
Merl from the Modsupport Team
And there it isā¦ the total lack of control no matter how much we think we have it together.
I have to admit though, a little piece of me gets mad if my issues are totally ignored alsoā¦ like someone planning a Costco run and 5 other errands in a day. I donāt want to look like I feel but I also expect them to know its too much. LOL. Not fair, I know, but human
A little piece??
For a long, LONG time (Decades) my concerns were minimised, written off and ignored until there was a major incident. I was driving down the road and the lights went out, I couldnāt see, scary stuff. That was the final straw that broke the camels back and that ālittle pieceā that got me mad was all too much and I exploded. Well, they took that as confirmation āHeās a nut, heās crazy in da coconutā¦ā Grrrrrr
I no longer allow the medicos to minimise my concerns. I mean, I donāt go to them unless thereās an issue of concern, major concern. In fact I avoid them like the plague if at all possible, so for them to make out like itās all minimalā¦ ā¦and my cup overfloweth. Arrogant sods. We donāt choose to be in this position, but here we are. ā Not fair, I knowā¦ā but their judgement aināt fair either. Iāve played their game for long enough and I donāt play anymore. This is not a game, this is my damn life. Grrrrrrrr.
Merl from the Modsupport Team
Wow. Iām so sorry you went through that. Thatās very scary stuff. I definitely went through years of being mistreated and blown off by medical people but thankfully nothing that severe.
I am aware that I am very lucky now. I have a weird variety of issues that some do and some donāt stem from Sjogrens and definitely cause me issues but I have medical people that take it seriously. My care was delayed for about 8 years due to one of those dismissive morons so I do wonder if things would have been different if I was treated earlier.
And Iāve often asked myself exactly the same question, what I call the āWhat ifās?? What if Iād spoken up moreā¦, louderā¦, soonerā¦ā but thereās no use going back there now. All we can do is deal with the āNowā, yesterdayās long gone.
Merl from the Modsupport Team