Getting spouse on board...

[wisconsin41]

Hi,
    I have a wife and 7 year old daughter. This past month I have had some doc. appointments and explained to my wife what I think I may have. From past experiences I have had with illness I realize most people just seem to show no empathy at all or just ignore you when you are trying to explain what you are going through.
     My wife is a sweet heart but she says almost nothing about my symptoms, rarely asks how I am coping.   I think she doesn't want to talk about it in hopes it will just go away?
I need support but am not sure how to approach this as she tends to be a doer rather than a listener...
Good luck to all,
Sad in Wisconsin

[finallyadx]

Wisconsin41- so sorry to hear about your struggles and lack of support, but I am, unfortunately with you and can sympathize and empathize.  My husband, although a great man, has struggled with my illness and my diagnosis for a few years now.  I finally had him come to a drs appt with me (rheumatologist and PCP) who backed up how sick I am and how sick you can be with this illness.  That has helped but I have also flat out told my husband that I need his support and encouragement and he needs to be able to give it to me.

I hope you can have a heart to heart talk with your wife, possibly bring her to a drs appt or two so she can hear what the medical professionals have to say and she can begin to support you in your long journey.

Sending healing thoughts and prayers your way.

[SjoDry]

So sorry Wisconsin 41.

I came across a site where someone had written a letter to explain to their friends & family about their chronic illness. I adapted the letter for Sjogren's Syndrome.
There is no way for me to attach the letter to this site. But I have it posted on my blog, SjodryandParched  - My Journey With Sjogren's Syndrome

The letter is called: An Open Letter To Those Without Sjogren's Syndrome.

Read it & see if you think it is appropriate. At the least, you might be able to have your wife read it just for the purpose of opening a dialogue.

Take Care.
SjoDry

[slccom]

There is also the Spoon Theory on butyoudontlooksick. It is very helpful.

It will take a while for them to "get it." If you are newly diagnosed, you have to mourn the old, "healthy" you (even though you weren't healthy, you probably thought of yourself that way. Your family did, too.) and move on to being you again, but with health issues due to autoimmune disease that you need to manage. You'll probably go through a phase of being your diagnosis, and that is fine. Just make sure you move beyond it.

If you can find a therapist who actually understands chronic illness, that person can be helpful both individually and with family dynamics. If a therapist does not understand chronic illness, they can be very destructive. Don't be afraid to fire them and find someone else who does.

Having to be more self-sufficient and really pitch in with family chores is really good for kids. They may not see it at the time, but later they will appreciate the skills they acquired. (Translation -- expect some pushback, but don't give into it! Keep in mind that my kids are all 4-legged and fuzzy, and take that advice accordingly.)

You'll all get through this and move on to a "new normal." The journey is not necessarily fun, but it is necessary. Keep in mind that your child is way more likely to develop autoimmune disease(s) than a child from a family without them as well. Your modeling how to cope will be very helpful if that does happen. And it is not inevitable, but knowing family history will let them get an early diagnosis if they do develop something.

Let your wife know what you want from her. Some expressions of empathy sometimes? Quietly stepping in to do things to save you energy? Telling you when she sees you heading towards overdoing? She may not know what to do and say at this stage.

The funny thing is that you are essentially in a role reversal situation. Usually it is the man who does not show empathy, and just wants to solve problems!

You'll all get through this, and be the better for it.

Hugs, Sharon

[Carolina]

Hi wisconsin41,

On the topic of chronic illnesses of the weird kind:  immune mediated (autoimmune/immune deficiency).

I would have to say that it is a rare person, spouse or otherwise, who really 'gets it'.

I also think that the closer the person, the more threatening it is when a loved one is 'ill'.

So when you put the two together, you get ambivalence at best, and confused/overwhelmed/impatience most of the time, and anger/resentment/rejection at worst.

The 'direct effects' of an auto-immune condition are usually the result of the part of your body that your immune system is attacking.

The effects that go with all auto-immune conditions are many and varied but almost always include: profound fatigue, general/specific pain, depression, and many others.

None of them show.   All of them are no fun at best, and life interrupting at worst.

FORTUNATELY:

We understand.

We know how to make life more manageable at many levels.

Here you can get amazing experience, advice, support and understanding.

I quoted to my husband one of the answers I got HERE today relative to an issue very important to my life.

He is a Phd researcher in immunology and he asked "Where did you get that?"  He saw how smart, helpful, and appropriate the answer was.

He was dumbfounded when I told him I got it from someone on this forum.

wisconsin41 we cannot get everything we need in life from one person.  this is a fact.  We need lots of people in our lives to provide us with the varied tools we need for success.

Let those around you give you what they can, but rest assured that we are also here for you.

Keep us posted.

Hugs

Elaine

[Sleepy In Seattle]

I agree with everything that's been said here, but just wanted to add that it may be a blessing in disguise: for some people, after diagnosis, all their spouse/friend/family/self can SEE is the ILLNESS. It becomes their whole identity, and the loved one/boss/patient ceases to be who they were.

Yes, the disease changes some parts of us and it is a huge adjustment, learning to manage it. It causes some unique problems because it's "invisible" from the outside.

But that is ALSO a blessing...we don't have to go everywhere with the burden of everyone seeing THE DISEASE instead of US.

I have seen relationships break up after diagnosis because couples stop being couples, and start being "patient" and "caregiver". That is not healthy!!!!

So while it's definitely important to continually work on your "new normal" with whatever symptoms come and go, also be happy that she sees you as YOU...a whole person, who she loves, who happens to have Sjogren's. It's just a small part of you that's sick - the rest is STILL YOU! 

[wisconsin41]

Thank you all. I hope I can drudge on happily in my new unwanted life.

[warmwaters]

The website sjogrens.org is also a good resource, especially for relatively short (1-2 page) descriptions of aspects of Sjogren's.  This may help if there's any subtext of "it's all in your head" going on for your spouse.

Couple of other things worth mentioning -

For many, how you are doing will vary over time. So something that's hard for you right now might be ok in a month, and hard again in two months.   It's worth introducing that idea soon, so that you don't get accused of being inconsistent. Inconsistency comes with the territory.

Also, she's welcome here - there are several people who regularly participate who support a family member.

And there are some good Sjogren's blogs out there too.

[quietdynamics]

... From past experiences I have had with illness I realize most people just seem to show no empathy at all or just ignore you when you are trying to explain what you are going through.
     My wife is a sweet heart but she says almost nothing about my symptoms, rarely asks how I am coping.   I think she doesn't want to talk about it in hopes it will just go away?
I need support but am not sure how to approach this as she tends to be a doer rather than a listener...
Good luck to all,
Sad in Wisconsin

It is hard for people going though this to understand that spouses and family need support and empathy as well.
They too are confused, concerned, and experiencing the loss of the persons abilities THEY once knew.
Even though we may think 'it' is all about us...it is not.

They feel overwhelmed, and helpless standing by watching. Some stop saying anything...not knowing what to say.
They miss the support and partnership of the relationship, the joy and laughter, cuddling, a tender touch, compliment.
Seeing, hearing about it everyday is draining and stressful on them as well. I have doctors and a therapist I talk to, and bring up points of the illness...not blow-by-blow commentaries at home.
Chronic illness is a family affair..to the extent that YOU allow it to be.

You mention your "past experiences  with illness"....perhaps she is hoping for everyone's sake it will go away.
You need to give her 'permission" to express her feelings and concerns...free of judgement. And you need to listen to her.  Holding in fears, concerns can lead to her depression.

People who are "doers" tend to listen better out of the home...so a car drive, dinner...for a relaxed, loving talk.

Love your "sweet heart" and you child needs to talk too.

[Joe S.]

wisconsin41, It took my wife quite a while to understand that this condition is disabling. When I quit work, I was down to two hours per week. I had trouble accepting this so I know that she also had trouble. "Spoon Theory" helped a bit initially.

Now I spend two to four hours each morning clearing mucus from my sinuses and throat. It takes about the same amount of time to gently pull the sand from my eyes so I can see properly. She has watched me go through this a few times as I choke and try to catch my breath. My receiving disability has helped her to understand a bit.

I have been falling asleep randomly through out the day. It is now between three and four times per day. I know that this is also frustrating her. She has asked me to go to the PT gym to try and increase my energy. I had several decades before this hit that I could stay awake for hours on end. After this happened it was many nights with little or no sleep and still functioning during the day. So now the naps have her worried.

I do not know if my spouse will ever fully understand but I believe that she is on board.

[jordozmom]

My fianc? (of 14 years) is fabulous about my disease, even more so now that he recently had a run in with ecoli shiga toxin and had terrible fatigue that lasted for months.  He said he finally had an idea of what I meant about being "wiped out" even after a full night's sleep.  One time he even had to lie back down after a shower - he finally REALLY understood what I was talking about when I say showers wipe me out.

My ex husband, however, was awful.  At one point I was paralyzed with hypokalemic periodic paralysis and he was good for about two weeks about taking care of our baby and the household, but then once I was up again it was as if it had never happened.  Things went back to normal - which at that point was me doing EVERYTHING around the house and taking care of our son and working full time - and he never asked how I was doing or when I was tired would never offer to help, and he NEVER asked how I felt about it.  Never.  The most frightening terrible scary awful thing in my life had just happened and it was like a hiccup - no one gave it a second thought.  GAH!

[slccom]

I can see why he is your "ex." His loss! Sharon

[BKreader]

I can totally relate. My husband has been slow accept this and rarely asks how I feel. But every now and then he surprises me with a comment or concern that let's me know he really is paying attention and caring. I think it is just easier for him not to be too involved as his plate is very full as it is. Now to get my 3 small kids to understand that mommy feels like crap and their fighting and dramatics just make it worse.

It's scary. Especially wanting to be there for your kids and not knowing what the future holds.

I have good days and bad. I now truly appreciate the good ones.

Take care,

Kirsten

[wisconsin41]

It's scary. Especially wanting to be there for your kids and not knowing what the future holds.

I have good days and bad. I now truly appreciate the good ones.

Take care,

Kirsten

Indeed.    I had enough energy to grill and make supper, put the dishes away, and clean the laundry. 
Thank you for all of the comments, suggestions, and encouragement. Good day to you all...

[Cassi307]

Wisconsin
It is not just a spouse or significant other. I have to rest a lot and have curtailed so e of my activities because of chronic pin and fatigue. I am a single parent and don't have family nearby and my issue is with my son who seems like there is no sympathy or support. Part of this is typical teenage behavior but he is the first one to go running to be supportive of his friends.

I think it just comes down to the fact that if they can't see the disability it isn't real. Hang in and find your support with people on this site who understand. Some day she might come around.