I feel like my life is falling apart and it has nothing to do with anything I did, I may never get to see my niece, nephew, or brother in law again. My sister stepped out on her marriage and abandoned her kids and husband to go be with someone else and now she’s mad at me because I don’t support it at all and me not supporting her means in her head that I don’t love her anymore. I care and love her but I don’t personally care about what she’s doing because she’s cheating on her husband. I’m in the middle of a huge flare up because of all the stress that i’m under. Everything has fallen on my shoulders and I just take all of that hurt and stress onto myself and it’s nearly impossible to not just hate your life. It’s just so dark and vast that i’m not sure if I’ll make it out of this one this time. Not sure this is Sjogren’s related except for the major flare up that I am in the process of but I just have to express my feelings somehow or it’s going to eat me alive.
Hey Leeann,
Stress can affect us all, but when you have an underlying condition that stress can inflame our conditions in any number of ways. Personally I have tried to push my condition to the side to focus on others and although I can do so for a while, eventually it all catches up with me. I’ve found that I need to put me first and look after me, although this does sound selfish, if I fry myself too much I’m of no use whatsoever to anyone. I have always been a ‘helper’ of others and have often sacrificed myself (both financially and emotionally) to do so, but we can only do that for so long. For me, I believe that some people have come to rely on me to be there for that support and when I’m well, that’s not an issue. But when I’m unwell it can be a huge issue. Trying to get others to comprehend this can be an issue, it’s like ‘…well, you could before, so why can’t you now…’
As I say we have to manage our situation for us, not them. They may see this as being selfish but if they had to manage in this state of health they too would want some understanding from others. This is NOT a case of being selfish at all, it’s a case of us looking after ourselves. Would any of us choose to be in this state of health? Of course not. So please don’t be beating yourself up because you are unwell, it only adds to your load and I doubt you need to be adding to it.
You need to look after you, not anybody else. We understand this fact.
Merl from the Moderator Support Team
That was awesome.
Great advice for all of us.
Thanks!!!
I really appreciate the great advice and constant support. Thanks so much.
And that is what we are here for, advice and support.
The only people who can truly understand rare illnesses is someone living with a rare illness and unfortunately we know rare illness, we live it everyday.
Merl from the Moderator Support Team
This is very well written.
I feel so alone with this…
I thought I could manage without support from people who have Sjogren’s, but even tho the people in my life are there for me, it’s too much now to continue to explain it all…
I’m so exhausted and still have no received proper treatment after seeing 3 RHEUMATOLOGISTS.
Helplessness is a Huge Issue right now for me.
Omg I responded to this 1 year ago 
I am so much worse now.
May 2018!!!
It’s unfortunate that neither of us have really gotten any peace and we’re unfortunately still in the same boat
There are two questions I would have for both of you regarding the depression. First off have you tried any of the disease-modifying meds? Treating the overall inflammation often can help manage the depression. Second off, are you working with a therapist and were considering meds for the depression? There’s no shame in seeking treatment.
I took anti depressants before and they always made me zone out and feel out of it I hated how I felt on them so I refuse to take them to be honest, I do talk to my pastor often and that helps, I am having so many other issues regarding my health that I’m afraid if I add anything else to the mix med wise right now it could have dramatic effect on me. A lot of up in the air stuff right now.
Hey Leeann,
Depression is VERY common with many rare conditions and although you state you’ve taken meds before and they zoned you out, it really can be a case of trial and error to find the right fit when it comes to ANY meds, be that depression or any other ailment. There is a whole range of lesser and more mild antidepressants.
That ‘…up in the air stuff…’ never helps. Finding answers can be one hell of a journey. I’m often saying "If I wasn’t crazy at the start, I was pretty damn close by the end of it all…’ Even finding the correct answers didn’t make it any easier. I still had one hell of a mountain to climb, it was more a case of then knowing the size of the mountain I had to conquer. And don’t get me wrong here, I haven’t conquered my mountain, not at all, I just know it’s size and how much I can manage here, today. Tomorrow is another day and I’ll need to reassess my ‘mountaineering’ skills then. We have to live within our abilities today and anybody who tells you that is easy has never been here.
I would still recommend talking to you dr about a calmative, if not an antidepressant. My mind can run away on me taking me to some awful, awful places. Something to mellow those thoughts can be real useful. Well, it was for me.
Merl from the Moderator Support Team
Oh Lord my post today is so much like this one.
Ugh.
Hey Robin,
Did you end up getting the proper treatment you required.? Did you find an appropriate rheumatologist to assist?
Trying to explain any rare condition is a battle, especially when we look ok. I’m often saying ‘…it would be easier if I’d lost a limb, at least that way people could see there is an issue…’ but without any outwardly sign people often doubt or question, then make statements like ‘Ohh it can’t be THAT bad’ I want to respond with 'No it’s not THAT bad, it’s worse" but instead I bite my tongue and give a sarcastic smirk.
Please know that we know because we live it too.
Merl from the Moderator Support Team