Friday, 22 February 2013

A Big Hand For Our Supporters

Many of us are lucky enough to have others in our lives who we could not live without and who help us far beyond the call of duty. It's not quite Downton Abbey treatment but only because our households are short staffed compared to Downton.  It's a lot of work to successfully deal with chronic illness and it's tough to do it alone.

Help in the house

I was struck by Eric and Kim's blog in December about the course of her RA and the level of involvement that Eric has as the well partner. He is a strong advocate for her best care, and a real believer that things can improve if they take the right steps. That makes all of the difference in the world.

There are other online friends I have made over the years and through looking back to our conversations day by day I have an appreciation of how much their husbands do as well.  It really does take a toll on the spouses and it affects so many areas of your relationship even while it is done with love. 

Honestly some days I feel like the queen in the parlor, eating my bread and honey while my husband does all of the work. It's not so much what you can do that bothers you - it's what you feel that you should do.

Eating her bread and honey

And then there are the drawbacks of relinquishing our independence when we must.  In my friend June's words "The way that my John acts, he enables me and causes me to feel like I can't or shouldn't do anything.  I tell him he is making an invalid out of me, even though I do need and appreciate his helpHe does smother me sometimes with his good intentions.  I have told him that he needs to let me do what I can do." 

"One of my friends commented on how he took such good care of me and was so protective.  I am one lucky woman!"  (And many of us are happy to agree)

It's great when things work out like that.  Some couples make it look so easy.
We go together like
I asked June if John wanted to comment and here's what she said: "We were eating dinner last night and I asked John if he would write something for your Blog about being a Spouse of a wife with Rheumatoid Arthritis.

He asked me "How do you spell - Living in Pure Hell" -  Then he started laughing.  He said it really wasn't so bad.  I said "what about all the doctor's visits, hospital stays, helping me with splints,  bandages, housework and pushing me around in a wheelchair sometimes".  He said he liked to read so it wasn't so bad waiting and he really liked to push the wheelchair."

No, not really.

"This paper about women with RA and their healthy spouses sums up worries of the spouse.  "Husbands were most affected by their own perceived vulnerability to disease and coping inefficacy."  So in addition to all they do, there is the worry about being able to continue to do it.

And here is a paper about social supports and how they help both spouses in chronic illness: "The effects of chronic illness on the spouse. Social resources as stress buffers".



  1. you're such a good source of info. Thanks for this post!

  2. Thanks for the comment. Great original topics are hard to find. I enjoyed your advocacy post.
    Did you read the one called 13 Ways that Lupus is like Downton Abbey?

  3. I agree that we are lucky to have our awesome spouses. My difficulties are primarily centred around fatigue lately: I'm having to spend so much time resting. It's so frustrating. And that leaves my better half dealing with the fires started by our adult children (which seem to be pretty big these days). Because we both have health concerns, it's like we're mutual carers. When we're both out of sorts (like today), then we just lie down and nap.

    The biggest role my wife plays is as an advocate for me at the doctors. I've had so many awful doctor visits over the years (so much so that I still can't bring myself to write about it in a single post), that she always comes in with me, even to the GP. I get foggy, so she is my second set of brains, and remembers things that doctors say, and remembers things I wanted to ask. I know I'm a big girl, and can do all that by myself, but I feel bullied half the time when I'm alone with doctors. They're so quick to dismiss what I'm going through.

    I wonder how many spouses do this kind of patient advocacy. That would be an interesting blog post.

  4. Great article Annette, and I agree with Jane about bringing my other half along to apts as a second set of ears. I usually forget to ask something and he also makes sure that I tell it like it really is and don't underplay it, so that I get what I need from the apt.
    I am also blessed with a wonderful hubby that does so much to keep this family going and I so often feel like Annette in her parlour while he's out in the kitchen cooking the family dinner after a long day at work. We are blessed for sure.

  5. It's a lot of help to have 4 ears at the appointments though we have not done that much so far. My husband did come to the hand OT and rehab appointments so that may be a start.

    It's difficult to deal with fatigue. RAWarrior just did a post on feeling guilty about being sick that was so true.
    In writing this I felt guilty for leaving out people on their own