Author Topic: My Husband Doesn't Get It  (Read 7823 times)

Chrisb

  • Guest
My Husband Doesn't Get It
« on: December 25, 2012, 07:01:15 AM »
Hi All,
Merry Christmas!  I told myself that I would have a good day for the kids but....

My husband and I were both cyclist.  He still rides and is on a racing team.  Anyhow my company sponsored him and now I'm eligible for a jersey because I Was a cyclist also. He gives me a card and tells me how much he loves me and says we're going tomorrow to get me fitted for a jersey to ride this spring and summer.  I didn't say anything and then later asked him if he has been listening to me regarding sjogrens, the sun, plaquenil.  He says he doesn't believe it and I can still ride.  I don't know how I can ride when my eyes dry out so bad,  I can't be in the sun during the day and summer.  I told him he's in denial and he said I just don't want to do it.

He just doesn't want to face the fact that I've changed. It's hard enough to know that I have but also having to keep proving it is even harder.

Christian
« Last Edit: December 25, 2012, 07:42:49 AM by Chrisb »

Tivia

  • Guest
Re: My Husband Doesn't Get It
« Reply #1 on: December 25, 2012, 09:20:44 AM »
Merry Christmas Christian  :)
First off I hope you are having a good day with family and friends celebrating the holiday.

Here is my question, has your husband ever been in the room with the doctor explaining you illness? Maybe he thinks if he gets you motivated like before you can beat back the disease? Or maybe he really is in denial I dont know. But I think its important for the rheumatologist  to explain to both of you what having sjogrens might mean for you specifically. I have this issue people think I am making up the whole seriousness of the illness, because they dont hear the doctor they arent in the room.


quietdynamics

  • Hero Member
  • *****
  • Posts: 2399
Re: My Husband Doesn't Get It
« Reply #2 on: December 25, 2012, 11:55:55 AM »
As an athlete, your husband may be aware of the 5 cents of media coverage Williams had regarding SJS and her tennis career. "If she can do it...well??"  When SJS was mentioned in articles about Williams, I felt it would be further misunderstood, dismissed out of hand..something you can control and "get over".  Again symptoms and effects are different per patient/ treatment.

I would take some quiet time to reflect on how YOU feel about cycling. Is this something you no longer want to do? 

As this is something the two of you have done together, your husband will feel the loss of you presence. Chronic illness affects the family, not only the patient. I have honestly asked my husband if he misses me, he knew I meant the vivacious person I was...He honestly answered "Yes".  By asking the question I let out my fear that I was now "boring" ( I was never home before, just out and about adventuring..lol) and it gave the man I love permission to express his feelings, sadness at the loss of his adventuress.

I also encourage him to pursue things without me. No I was not going on the motorcycle (which was my idea to get..to adventure..lol) and get stuck somewhere. So I found a group that he joined and he goes on trips, some for two weeks at a time. Everything is plotted and posted, so from home I get to follow along. He makes note of places he wants to take me to in the car.
This let him know I was not feeling "left out", abandoned. 

He will learn about your illness and you will need to learn of his emotional/physical loss as well.
Just something to think about.

 
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

eyeamdry

  • Guest
Re: My Husband Doesn't Get It
« Reply #3 on: December 25, 2012, 02:16:46 PM »
My 70 year old rheumatologist has Sjogrens.  My husband asked her why she can handle a medical practice and I can hardly get out of bed.  She dr explained how some us were further along in our treatment (her) and others do not have conditions as well controlled. 

Lucy

Ark mom

  • Hero Member
  • *****
  • Posts: 613
Re: My Husband Doesn't Get It
« Reply #4 on: December 25, 2012, 02:45:29 PM »
Merry Christmas all!  Well, Christian, at least he is trying.  He may not understand what you are going through, he did show you that he loves you with a sweet card and thoughtful gift.  You should get fitted anyway.  It is a way for you guys to bond from his perspective.  You never know what the spring will be like for you.  You might be able to tolerate evening rides when the sun is low.  Wearing goggles can help with the wind. 

At least he made an effort.  My husband didn't get me anything for Christmas, not even a card or heartfelt expression of anything.  See? Could have been worse.
41 yo with Sjogren's (sero-neg), FMS & sub-clinical Graves; Plaquenil, Evoxac, prednisone, Restasis, Cellcept, gabapentin, duloxetine

SjoDry

  • Hero Member
  • *****
  • Posts: 936
  • "When you are battling with a gorilla, you don't g
    • Sjodry and Parched
Re: My Husband Doesn't Get It
« Reply #5 on: December 27, 2012, 05:20:37 AM »
Hi ChrisB.

I was messing around trying to teach myself how to blog and also how to market my business with videos.

For the heck of it, I made a video about a day in my life with Sjogrens. I have been shocked at the number of folks
who have contacted me & told me that their spouse did not "get it" & my video helped them to explain SJS to their spouse. While I created it with
my wacky sense of humor, it is also very truthful without exaggeration.

Check it out: http://sjodry.wordpress.com/category/videos/  (A Day In The Life of SjoDry)

Good Luck. It may take a while, but he will get it.

SjoDry
Sjodry
http://sjodry.wordpress.com/

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

keithmarty

  • Guest
Re: My Husband Doesn't Get It
« Reply #6 on: December 27, 2012, 08:18:01 AM »
Sjodry - Your video is SO cool! Thanks for sharing it with us!  I wish I could "play around" and create such an awesome video! :-)

Tivia

  • Guest
Re: My Husband Doesn't Get It
« Reply #7 on: December 27, 2012, 09:38:56 AM »
SoDry that made me cry..well try too. Why do people think its only a minor annoyance, that makes me so upset. People around me go ..oh stop being a baby its just dry mouth a little tiredness :(

I am like yeah why dont you get the disease then talk. I am sorry I wouldnt wish this on anyone...but for one week I would like them to experience the full effect of sjs.

gem.j

  • Guest
Re: My Husband Doesn't Get It
« Reply #8 on: December 27, 2012, 09:43:15 AM »
Chris my Husband is exactly the same. I am constantly having to justify myself to him which really hurts my feelings he wants me to carry on doing everything exactly how I did and pretend there is nothing wrong.

stick gal

  • Guest
Re: My Husband Doesn't Get It
« Reply #9 on: December 27, 2012, 12:13:20 PM »
My hubby struggles too. We play music together and the equipment loading and unloading plus 4 hours on my feet onstage are beginning to be too much. We have hired folks to help hubby load and such but I have ra in my feet and the pain is becoming too much. I have trouble singing well in a sitting position so it is difficult to find an answer other than quitting. I've encouraged him to find a good band to play with but he wants us to continue. It's sweet but is also a lack of understanding of the pain and fatigue

slccom

  • Guest
Re: My Husband Doesn't Get It
« Reply #10 on: December 27, 2012, 12:20:50 PM »
Merry Christmas all!  Well, Christian, at least he is trying.  He may not understand what you are going through, he did show you that he loves you with a sweet card and thoughtful gift.  You should get fitted anyway.  It is a way for you guys to bond from his perspective.  You never know what the spring will be like for you.  You might be able to tolerate evening rides when the sun is low.  Wearing goggles can help with the wind. 

At least he made an effort.  My husband didn't get me anything for Christmas, not even a card or heartfelt expression of anything.  See? Could have been worse.

I'm guessing that you wouldn't have liked what he said in an honest "heartfelt expression." You know what? His attitude is his loss. You are a wonderful and special person, and he is the one missing out.
Hugs, Sharon

slccom

  • Guest
Re: My Husband Doesn't Get It
« Reply #11 on: December 27, 2012, 12:27:12 PM »
My hubby struggles too. We play music together and the equipment loading and unloading plus 4 hours on my feet onstage are beginning to be too much. We have hired folks to help hubby load and such but I have ra in my feet and the pain is becoming too much. I have trouble singing well in a sitting position so it is difficult to find an answer other than quitting. I've encouraged him to find a good band to play with but he wants us to continue. It's sweet but is also a lack of understanding of the pain and fatigue
Are you singing all the time? Could you sit when you aren't singing? And could you practice singing sitting down? Or try a tall stool. I play bass clarinet mostly, and instrumental musicians learn to breathe sitting down. Could you have numbers that are all instrumental when you could sit? Add in another singer and share the load?

I play clarinets, the bigger the better, because my parents used to listen to me sing along to the player piano and decided to encourage me to take up the clarinet.  ;D

What a sweet husband!
Hugs, Sharon

slccom

  • Guest
Re: My Husband Doesn't Get It
« Reply #12 on: December 27, 2012, 12:32:10 PM »
My husband became ill with chronic fatigue syndrome 20 years ago. I have to say that I didn't "get it" until my Sjogren's progressed to the point where I have the fatigue as well. However, I didn't have to "get it." I just had to accept that he was fatigued, and believe him when he said he couldn't do something, and find a way to work around it to do what I wanted, or graciously just not do whatever it was without blaming him either in my head or out loud.

Share butyoudontlooksick with him. That will help.

Sharon

slccom

  • Guest
Re: My Husband Doesn't Get It
« Reply #13 on: December 27, 2012, 12:56:05 PM »
Hi ChrisB.

I was messing around trying to teach myself how to blog and also how to market my business with videos.

For the heck of it, I made a video about a day in my life with Sjogrens. I have been shocked at the number of folks
who have contacted me & told me that their spouse did not "get it" & my video helped them to explain SJS to their spouse. While I created it with
my wacky sense of humor, it is also very truthful without exaggeration.

Check it out: http://sjodry.wordpress.com/category/videos/  (A Day In The Life of SjoDry)

Good Luck. It may take a while, but he will get it.

SjoDry

This is a wonderful video! It should be a thread of its own, and mentioned in the Resources section as well.

Great job!
Sharon

SjoDry

  • Hero Member
  • *****
  • Posts: 936
  • "When you are battling with a gorilla, you don't g
    • Sjodry and Parched
Re: My Husband Doesn't Get It
« Reply #14 on: December 27, 2012, 01:06:05 PM »
Thanks Sharon & Keith.

It never occurred to me that a little video would help to illuminate our condition to others.
As they say, a picture is worth 1000 words. If it helps even one person to understand & be more supportive, I am very happy.  :D

SjoDry
Sjodry
http://sjodry.wordpress.com/

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;