Results 1 to 10 of 13

Thread: How do I help him understand?

Hybrid View

  1. #1
    Join Date
    Jan 2012
    Location
    Midland, TX
    Posts
    179
    Thanks
    173
    Thanked 25 Times in 21 Posts

    Unhappy How do I help him understand?

    I need help making my live-in boyfriend understand my new circumstances. He's been informed of my complications, and of course of my recent (somewhat of a) diagnosis of Lupus/Systemic Sclerosis, but he's not getting it. I may be a little sensitive, but it just seems like he's treating this diagnosis as one similar to having strep throat and that I'm 'over-reacting'.

    And hell, maybe I am. I'm a little scared, a little relieved, and EXTREMELY confused. There's not a lot out there about SSc and it's hard understanding these overlap diseases. I'm sure those of you with overlap understand. (Is this the Lupus? The Sceroderma? The sun? Is it just a cold?)

    I've tried asking him to educate himself, but that hasn't happened. Maybe if I force him to learn about it? LOL.


    As far as signifigant others go, I can't complain. And it's not that he 'doesn't care', it's more that he doesn't know how to show it.
    "Rule number one is, don't sweat the small stuff. Rule number two is, it's all small stuff."
    -Robert Eliot

    Dx: Potential Lupus, Diffuse Systemic Sclerosis, Mixed Connective Tissue Disease

    Rx: Prednisone 5mg 1x daily, Lyrica 75mg 2x daily, Omeprazole 200mg 1x daily, Xanax .5mg prn

  2. #2
    Join Date
    Apr 2011
    Posts
    243
    Thanks
    110
    Thanked 55 Times in 39 Posts

    Default

    He like you, is coming to terms with the diagnosis and I would gently work on getting him on board because behind closed doors of your home, you are fighting the same corner, you are in the same team and cannot afford to have 'enemies'. Whatever anyone outside thinks, it is him that you need to educate.

    Ask him to come with you to your next appointment, discuss it with him when you feel calm, do it in an educational kind of way rather than an 'I am sick' kind of way, that is how I taught my husband. My hubby now sees the sunshine and orders me to put my hat on, he knows when I am having a flare and even spots my face looking 'sucked in' as the Sjogrens dries me out.

    He is at a different stage to you with regards to acceptance and it will take time and patience, dont bombard him with your symptoms, just tackle it in bite size pieces but encourage him to go with you to your appointments.

    It is so hard to come to terms with an illness, I dont know about you but I was so relieved to get a diagnosis, it is only now I think 'damn it, I am saddled with what I can only describe as a hostile lodger in my body' and now I am over it and want rid of it. Then you realise it is for life.

    Hugs to you because it sure takes a lot to get your head around it. Give your partner a big hug, no words to be said when you hug him, just give him one of those hugs that says 'whatever happens, we will be OK and get through it'.

  3. The Following User Says Thank You to Corella For This Useful Post:

    tripLexie (02-28-2012)

  4. #3
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,901
    Blog Entries
    1
    Thanks
    1,387
    Thanked 1,611 Times in 1,103 Posts

    Default

    2 things i found very helpful are;

    "a letter to normal people"
    and
    " john hopkins medical centre
    Lupus Information
    by Michelle Petri, M.D., M.P.H."

    the first reference is to a letter written on the lyme desease blog, but now used on many sites.
    i heard about it on here.

    the second one was a thread here.
    hopefully one of the moderators can give you the link.

  5. The Following 2 Users Say Thank You to steve.b For This Useful Post:

    Corella (02-28-2012), tripLexie (02-28-2012)

  6. #4
    Join Date
    Jan 2012
    Location
    Midland, TX
    Posts
    179
    Thanks
    173
    Thanked 25 Times in 21 Posts

    Default

    Thanks guys. Great suggestions. Steve, I'll have to google the first one, but I've read the John Hopkins one and it definetly seems like having him read that would be a good idea.

    He's actually already making progress, LOL. Just yesterday he picked me up from work and I was in a whiny/moany mood. I said "Ughhhhhh my joints are hurting so bad." And he replied, "I'm sorry babe." and grabbed my hand. It sounds like nothing, and quite petty, but it's a start and it definetly made me grin inside to know he's starting to (try) to see my pain.
    "Rule number one is, don't sweat the small stuff. Rule number two is, it's all small stuff."
    -Robert Eliot

    Dx: Potential Lupus, Diffuse Systemic Sclerosis, Mixed Connective Tissue Disease

    Rx: Prednisone 5mg 1x daily, Lyrica 75mg 2x daily, Omeprazole 200mg 1x daily, Xanax .5mg prn

  7. The Following User Says Thank You to tripLexie For This Useful Post:

    Corella (02-28-2012)

  8. #5
    Join Date
    Apr 2008
    Posts
    961
    Blog Entries
    4
    Thanks
    33
    Thanked 47 Times in 43 Posts

    Default

    Just an idea. You might try checking out You Tube for a video on Lupus. I found a really good one on Fibromyalgia, where a sufferer explained how she felt with fibro in pictures and words. He could sit down and watch a video, which would only take a few minutes of his time to see. Then perhaps he would be more empathetic to how you are feeling. Also, there are some educational ones too. You could preview them first and then put on the one/ones you would like him to watch.

  9. #6
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    Have him read "The Spoon Theory". It has helped many understand a bit better

    The Spoon Theory
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •