Anger Over Scleroderma
Posted 02 January 2007 - 12:40 PM
Posted 02 January 2007 - 01:43 PM
I don't know your situation, as I just joined yesterday, but I have been dealing with my 6 year old daughter being diagnosed with linear morphea/scleroderma for a little over a year now. I don't even know the stages of grief in the correct order, but I seem to be stuck in the "sadness" mode, even though you would never know that my daughter is ill by looking at her or even being around her. I can't seem to get enough information about her disease, even if it fuels my sadness. My husband, on the other hand, doesn't want to know anything about her illness other than what do we need to do to "fix" her, as she is the sun in his sky. I reminded him yesterday that there is no cure (YET).
What I'm trying to get at is that maybe your husband isn't ready to deal with your illness yet, or is processing it in his own way. However, if he's just a jerk, then time will tell, and you'll be better off without him. I'm sorry that he is not supporting you much at this time.
Posted 02 January 2007 - 01:53 PM
It's almost impossible to give advice, but I have been in the same situation, and so have so many other women on the board. Maybe I've gotten past the anger over the sclero and other CTD's--I've had over 3 decades to work on that--but not knowing the future is scary, isn't it? Last spring and summer, it was the hardest hit I've taken yet, ending up bedridden for 4-1/2 months, and everyone thought I was a goner. August 16th I got up again, and although I can't say I'm "all better," even at the bleakest moments things can change. It's a very unpredictable disease, so please don't worry about the future--it will make you very sick!
How to get through to a husband...that one is a mystery! My husband got a wakeup call one night when he was out, and how it happened at that particular moment is beyond me. 15+ years, then, bang! His eyes opened. I don't know what could happen with your husband, but I'm just saying that things might change...something might hit him at some point. In the meantime, I am so sorry that you're also in this situation, but if we can at least listen and try to give you support, we'll certainly do our best!
Hugs and best wishes to you,
Posted 02 January 2007 - 03:32 PM
I wish I could give you a real live hug. My heart goes out to you. This is such a hard thing to deal with, and you need the support from your mate. If you lived close enough, I'd pop over and have a chat with your husband. Sometimes hearing it from someone else helps.
I also wonder if he is scared and angry too and this is his way of dealing with it.
You've probably already seen this link, but just in case I thought I'd pass it your way.
And please, always feel free to vent here, you will never get on any one's nerves.
Posted 02 January 2007 - 03:54 PM
I am very sorry that you are dealing with this crummy disease on your own. I have tried dong that and it is hard, hence why I am here. My hubby took a while to get the idea of what is going on but he finally did when he was with me alone one day and I needed a shower. I have to have help with showers and he found out just how much the disease has marked my life and body. Now he is much more understanding and helpful. Thank Goodness!
My mom is the one who I had trouble with. She was quite unfeeling in regard to the diagnoses and told me to take the meds and get over it! Oh well it aint happened yet, but she is waiting. What a hoot that is now!
Hugs to you Marie. Everyone here has been very nice and very forthcoming with advice and cyber hugs. Always a kind word for you.
Bless you in your journey.
Posted 02 January 2007 - 05:24 PM
Take it from a man. We're all lazy and selfish. But not always insensitive.
I think your husband sounds like he's always been this way, just now you need him to be different and he's not willing to "step up".
It's a big disease, and it takes time for people to adjust. You'll have to try to keep working on him (as if you don't have enough to worry about right?)
Wouldn't it be fun to set him up... like say with a friend who is a Dr. have the friend sit him down and say..."we've found some bad things on your tests. It looks like you have sladkfjxyz and it's incurable. Your gonna be really sick and you could die."
Then let him sit with it for a few days. Then tell him it was a set up.... Now do you know just a little bit of how I feel? Without any symptoms, fatigue, pain etc!
That would be great right? Just letting you in on one of my dimented fantasys that I imagine when it's hard to deal with family and friends.
It can really be hard on a marriage. As if marriage was easy without a terrible disease. Keep trying because your problems are to be expected. Many on this site will attest to solving these problems with time and better communication.
Not that he deserves it. But you might make an impact by doing something outrageously nice for him. Order his favorite food, rent his favorite movie, surprise him. Just tell him it's because you love him.
Then... the next day. Ask if you can have 5 minutes to tell him about how hard a time your having and you just want him to try to be more sensitive for you. Tell him you love him and you need him to understand you.
Don't worry about the dog, and the computer. Those things are just symptoms of his failure to understand and sympathise with you. Plus, men never do enough around the house.
just thoughts I have no expertise in this subject matter.
Michael in Florida
Posted 03 January 2007 - 03:19 AM
My husband has not to this date read about my Mixed Connective tissue disease. He just cannot handle all that is written about it. BUT< he helps me with everything when I need it and gives me alot of encouragement and love. I have come to accept this as enough. Susie54
Posted 03 January 2007 - 04:35 AM
I'm so sorry you have so much baggage to deal with along with the disease itself. It's just not right, but unfortunately, as you can see, it's not unusual. People act the way they do for several reasons - denial, being scared, lack of information, not knowing, not caring, just to name a few. Unless you can get them to open up, there is no way of knowing. I like Mike's advice about doing something outrageously nice as an opener. It's worth a try.
I know this forum is a great place for support and virtual hugs, but it does sound like you need a friend to give you that breathtaking squeeze. May I suggest you check to see if there is a support group in your area. Ask your rheumatologist or the nurse. You definitely need to talk things out face-to-face with someone who will listen and understand. This may also help you deal with the situation at home. It's worth asking.
Big, big hugs to you Darling,
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 07 January 2007 - 02:04 PM
I am so sorry to hear what you are going through right now. I just finally got a diagnosis of Scleroderma, Sjogren's , and Fibromyalgia. I was ok with it at first. Now I am really angry and frustrated. I was screaming at my husband and son yesterday that I was sick of being sick!!!!!!!!!!!!!!!!!!!! The poor dears. They were so glad when it was time to go to my son's soccer game. They told me to stay home and rest. I started laughing and said to them that they just needed a break from me. I am very blessed in that my husband and son are very supportive. That's why I feel so guilty when I have a pity party. I am very fortunate to have them.
At first I didn't think my husband understood because he wouldn't talk about it. I then realized that he was so upset he couldn't talk about it. He had researched it online and was terrified.
I do hope that your husband will wake up and figure it out. I wish you lived close by, but this forum is a great support!
Posted 07 January 2007 - 05:06 PM