Bitter

[shortstuff]

I was diagnosed last August.  I was so upset the first few months and then kind of settled into the idea of having an incureable disease.  I'm fortunate for now that my only symptoms are dry eye (sometimes nose, mouth throat but not on level w/ my eyes) and fatigue.  For the most part I can operate relatively normally and take care of my kids.  I know I'm lucky, but my eyes bug me enough that I don't feel that way.  However, I feel that my spouse has not been supportive, empathetic or understanding at all.  If I talk about my Sjogren's he spaces out and does not offer any kind of reply, not even a few kind words.  He absolutely never asks how I'm feeling.  It is up to me to discuss my issues and when I do it's met with blank stares or disinterest.

Recently his sister, who has had a condition since she was a child, attempted fertility treatments and because of the medications necessary she became very sick for 3 weeks.  Apparently she was at no point in danger of death but laid up for several weeks, one in the hospital and now she has to take it easy to preserve the pregnancy.  One evening when he called to check on her I was literally shocked at the sound of genuine concern for her in his voice.  Inside I seethed that I have never received this kind of attention or care.  Ever since I have become more and more bitter that he can't show me love in this way.  I don't know what to do but if I bring it up we are sure to have a huge fight.  I can't handle fighting with him anymore....when I cry my eyes hurt and swell up for days and it just drains me.  He never steps back and sees it my way.  And I also realize that I sound terribly bitchy and selfish at the same time.  He says I have "a little bit of something."  I felt bad for his sister and was worried about her, too, but somehow this issue with her pregnancy (which resolved and did I mention that obviously the pregnancy was planned in light of her underlying health issues which are also not life threatening) and the idea of her feeling badly for a few weeks or possibly 9 months is much more important than my incureable disease and my daily unrelenting discomfort.  I am so mad I don't know how to get out of this place.

[Chickpea]

Dear shortstuff

You poor soul!  You don't sound 'bitchy and selfish' as you worry you do.  You sound frightened and lonely, and as though you're not getting the love and support that you need.  I'm glad you came here to tell us - we understand the whole range of emotions that a SjS diagnosis brings.

Maybe your husband is scared for you, but also for himself and the effect that your condition may have on the whole family.   He doesn't want to burden you with this so he tries to ignore it.  How many men cope with stress by burying their heads in the sand (Is that just a British English expression or does everyone use it?!) and hoping it will go away?

If you compare yourself with others - people here or your sister-in-law - you're probably going to feel worse about everything.  We can never know what each person is experiencing deep inside, or why some people struggle with life so much more than others.  I don't think it's about strength but more about what we learn growing up about how to deal with difficult times.  Maybe your husband is aware that his sister isn't good at coping?  And maybe he relies on the strength he's aware that you have?

Keep posting and letting us know how you are feeling.  We care and we understand.

Thinking of you - Chickpea

[Jellyb]

Hi shortstuff,
The glazed over expression you used to describe your husband, is all to familiar to me. Being that I was diagnosed this last Feb. I have been having all these moments of discovery linking my weird health issues to my SJS and finally having answers, and he just stares at me blankly.

He does not understand how long I pretended to be a normal person trying to act like I felt fine or hiding my bloodshot eyes, rashes fatigue ect. And that now that I know, shouldnt there be a little more support, even just being an active sounding board for my conserns and fears for the future.

Maybe chickpea is right, maybe they are just scared for us and what the future hols for them as well as us.

[hollowoakfarm]

I think that it's a different issue to address.  I've had to do the same with my spouse.  See, his sister being in a hospital is something he can understand.  Really sick people go to hospitals.  Other types of really sick people have pins sticking out of legs, crutches, wheelchairs, hair falling out, SOMETHING visual.  The only thing my husband really recognized (until fairly recently) of what I have is the Raynauds, as he can see the color changes.  He can't see the symptoms of the Sjogrens, unless I'm in a serious flare that really screws up my eyes.  It's only since I had to got two forearm crutches for my IBM that it really hit him that this is permanent, degenerative, and non-treatable.  The Sjogrens? He just can't see it.  He can't relate at all.  So, if I say anything to him, he really thinks it's all in my head, that I'm complaining, whining, attention-hunting.  Or at least he used to, until recently when we've had to start discussing wheelchairs, as I've hit a heavy slope of disimproving. 

I bet your hubby is similar.  He's not trying ot be unhelpful.  He just really can't relate, because there's nothing to see.  It's like an emotionally and mentally healthy adult trying to understand a psychopath.  We just can't see it.

It took me years to see the problem, but I have no real solution for it.  Perhaps getting your doc to discuss it with him will help.

[irish]

You have my sympathy because it is rotten to feel ill and not be validated. The reason we sjoggies are blessed with this treatment is because we don't look sick. People just can't get a handle on autoimmune disease because so much of what happens to us in "inside" and not visible to others. You can't see pain, fatigue or eyes that may show damage inside the eye.

Your sister in law is on bedrest, pregnant, in the hospital and has all kinds of ovbious and more understandable problems. Thankfully, they will soon pass and hopefully she will deliver a healthy baby after all this.

All you can do is find a support group, if possible, and also see if your hubby can go with you to the doc sometime. I will say though, that at this point in your disease process he probably won't glean much medical information.

The sad thing is that we have to have more obvious health problems with our sjoggies before the relatives get the picture. I have quit talking to relatives about our illness anymore. An email doesn't even get their attention. They will be coming in a couple of weeks for a couple of weeks and it will be interesting to see what they have to say cause things sure aren't as good around here as they used to be.

I think that with all chronic illness we all have to develop a very thick skin and also learn to pick and choose our battles. When we get sick enough that we can't work our spouses notice big time. Some spouses are very understanding, but I still maintain that the only way to truly understand anothers suffering is to have suffered yourself.

My hubby has had many severe and near fatal illness in the past 10 years and I know that he is much more understanding than he was before. Healthy people do not get it. Period!!! Knocking your head against a wall and trying to make someone understand is a waste of energy. Do what you can with what you can. Pace yourself and learn your limitations. Be understanding and hopefully it will be returned to you.

I don't mean to sound cynical, but I am!lol Many people have posted as your have over the years so it is a very common issue. Try to train your kids to help without letting them know that you don't feel good most of the time. They need to learn to help anyway, so save your "neediness" for the times that you really feel terrible. Irish

P.S. I had a hubby who traveled and was gone much of the week for 20 years. We had 3 boys, hobby farm and I worked part time as an RN. I haven't felt good since I was about 20 or so. I don't know how I got through all those years and all the work and stress but I did. Somehow we manage to do what we need to. Sjoggies become tough people!!!!!!!!

[Luna]

Dear shortstuff.  You do not sound bitchy at all. It hurts when someone we love does not show the compasion we need. I do think that chickapea has a good point. Irish does also. I hope you and your husband can get through this and you feel better about it. Sometimes we have to be stronger than them. For ourselves and for them. Mostly, you need to feel better. I hope you can find some peace in this. I think taking him to the doctor with you is a great idea.
I wish you well in this.

Luna

[season]

This is always hard because we just need to be understood.

Sometimes our eyes, nose and throat really hurt and are irratated. We just want to hear, "Honey, I know your are hurting today, is there anything I can do for you?"

Sometimes we can be really tired and we want to hear, "I see that you are tired, what can I do to help you?"

Sometimes we just don't feel well and it would be nice to hear, "Honey, don't prepare dinner tonight. I'll go pick up a pizza."

Our spouses sometimes don't get it, so the important thing to remember is ask yourself what you can do to make yourself feel better or more comfortable and then go for it. If we wait on the spouse then we may never feel better. And in defense of the spouse they really sometimes don't understand------at all.

We search for the words "I care about you and your illness." But those words may not get said a lot. Sometimes spouses don't want to hear a lot about our illness unless we are deathly sick and then they will ask, "What's wrong?"

Take care of yourself and tell the hubby what you want. Simply tell him what you want---in a kind way.

"Honey, I am really stressed today, would you go pick up a pizza?
"Sweetie, my eyes have given me a fit today, would you please help me fold the laundry?

I hope you feel better tomorrow. I think most of us go thru this at times.

[eyeamdry]

Hi Littlebit:
Sorry you have been having a rough time at home.  I don't hear you say that you are doing any treatment on your eyes.  Sometimes things others "see"  might get them thinking you may have a "real" illness.

Do you take time to do the warm/cool compresses on your eyes a couple of times a day?  (when hubby is home so he can see this)  Have you bought a pair of Tranquileyes to wear to bed at night to help the dry eyes?  Certainly, he could "see" this.  I am not trying to get you to fake things for his sake, but possibly if you make it a habit of doing things to help yourself in front of him (and the rest of the family) it might be taken more serious.  Maybe not, though. 

If it was me doing this, I wouldn't speak a word about it, just go about the necessary things.  Good luck and you always have us.  Lucy

[dante]

Hello shortstuff

My husband and I have been through alot in the last 18 yrs...he has been my pillar of strength...as for this disease hitting me, I don't think he knows how to handle it...at least with my cancer, we had support groups to help him learn about what I was going through...it's hard for someone to sit by and see their loved one hurting and know that they can't help you...my husband feels helpless right now so he withdraws...find a support group for sjogren's or even chronic pain...that will help the two of you to understand better of what's going on...Good luck   

[shortstuff]

Thank you to all of your for your replies!  It is so hard because I know the answer is I have to find the strength within myself.  At the end of the day I am the only one I can truly count on.  UGH!  I hope someday he understands.