Hi Rose the way that your family feel is OK they are just scared. And my husband have told me the same thing that he wish he could fix it or fix me.they will come to you when they are ready to talk about. just give them time its new to them and you. And I was sad that my family did not talk to me about it too. it like you have know one to talk to about it.But you will be OK if you need to talk or say some thing come to the DS family. Its not the some but we all have the same thing RA. You know it will be OK
HUGS
Cynthia

YES to your question, have other experienced this. In the beginning the RA symptoms were minor (I now know) and would only come in rare flares. Now that I have been in a heavy flare mode for nearly 6 months my family is noticing the big changes it has made on me. My son (11) made the comment, "You just are not the same dad". My wife, a nurse, does not seem to want to discuss the R.A. much. Like you stated, I think my wife is still in the denial phase. When I mention something I found out online about one of my meds or RA in general she says I need to quit reading everything online. At first I think she thought I was going to feel worse seeing the potential effects of RA and afraid I would be looking for more symptoms to arise. Now I believe she is starting to understand that I have learned more about RA and the meds from this site than any other location.

I am at the same point of trying to push towards acceptance of dealing with RA. My denial stage is past, just trying to deal with the anger and frustration figuring out what the future holds. I think the family will eventually catch up, but as you stated, they are having a hard time of dealing with the changes RA has caused in their lives.

Wishing you the best.
Justin

Dear Rose, I don't know if this will help you with your family, but it helped a lot with mine. My children are grown and my husband isn't quite how to deal with the whole RA thing since there's nothing he can do to fix it. I'm sure many on this site have seen this essay on The Spoon Theory before, but maybe it's new to you. The link is http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
It's written about Lupus but it applies to most autoimmune diseases. One son called me immediately after he read it and really talked to me about what was going on. My other son needed a little coaxing but once he got started he really opened up. My husband finaly understood why I often didn't have the energy to do some of the things we used to like to do together. I hope it helps you and yours too, Sandy

I hope this doesnt seem to harsh but the bottom line is they need to get educated on the disease just as you do. Get online and do some reading, get some pamphlets at the drug store and all read. I have three kids and everyone had to get schooled, it's the only way. Just as you have to deal with this, so do they. Everyone involved has to come to terms with it. Again, sorry if it seems harsh but it is a harsh disease. Good luck and stay strong.

I really like wrenchead's comment. The family really should know what it is all about. But, I do know that some people deal with situations differently than others. And the same for the person that isn't directly affected by the disease. They maybe scared and confused at the same time, and don't know where to start with questions for you.

Hello Rose,
Im trying to get my thoughts together, the number one thing I would say is You need to worry about you, as you said you are coming to acceptance, ect..its gonna take time, your family each member will deal with the disease in their own way, the Fact that you laid it out for them is all you could do and all you need to do, when they feel the need for more info or even sharing their feelings about it they will come to you. But there is nothing differently You Nor They should' be doing. At first my 13 yr boyfriend didnt wanna hear it, so I didnt talk much to him I found others who i could vent when i needed to to, He then came to me and admitted he was scared shiteless, that if something happened to me he wouldnt know what to do' so he tries not to think of it, my daughter shes 17, she never talks about worry some things, she deals in her own way, and waits for my smiles, the disconnect you may feel is from the disease itself, your family dont have it, we do, and because its now a part of our lives (uninvited as it may be), we do less things with the ones we love or feel the pain they cant, I have now felt more connected to both members of my family as now i laugh when i cant turn over on the beach and my daughter laughs to, she buckled me up in the car we laughed, my boyfriend and I got into a heated arguement, and you know when u want to STORM away??? well, I could only SHUFFLE away, so he turned to me and said "thats right shuffles'...shuffle away" we died laughing cause i couldnt storm off. I dont want my family to feel as dark as i do, so I share those days in here with others that can understand my pain, and my family well I try to emotionally be as Funny and the same person emotionally as i always was so that I and them WILL always feel Connected So Rose you just need to relax and adjust to ebs and flows and Knhow u r loved! Peace & Love and Prayers for you to feel connected to your loved one! ..Donna

Rose I experienced the same thing! Everytime I tried to talk to anyone about what I was feeling, or going thru I could tell I made them uncomfortable and they would quickly end the conversation. I was hurt and in trouble because the best way to process any major event is to talk about it, pick it apart and really get to be comfortable with it.

Well when I realized that wasn't going to happen with the family I went online and looked for a RA support group and that's when I found DS. Once I started asking people questions, reading everyones responses and answering some myself, I started to feel better and better. I stopped trying to engage the family and kept all my issues online with my friends.

After a while my family stopped running away when I came near, lol and even started to ask me how I was feeling???? LOL Now I bring home new and important news and then I let it be. So now everyone is researching and asking questions on their own and it's no longer an issue...we are all happy. So whatever you do, don't go away people I really count on you! hugs jilly

This may just be me but... It sounds like you have done all you can. The two things I heard from your post (and do correct me if I heard wrong as often as I am) is one you want them to be at the same stage in this journey as you are and two you want to feel connected in this disease with them.

On the first one I would guess the gut reaction is no that's not it exactly but the truth is they still need to go through the emotions and deal with it in their own time and own way. You can't change that. You can only change how you react.

Second, as much as you want to feel an RA connection with them I honestly hope you never do, because the only way I have ever felt that connection is when the other person has it as too. At least that has been my experience for another very life intrusive disease I've had for 28 years. I can't imagine it will be any different for my RA and I doubt I could even achieve that connection with you with my other disease!

I am ever so grateful my husband is clueless as to what RA really feels like and how difficult it really is. I am in love with the fact the my parents just don't get it and I don't feel bad one bit at all that none of them really want to talk about it.

If they don't want to talk about it I figure they can forget for a while - that it's not even in our lives for a moment. At least they can forget until I grimace in pain when I go to stand up. I like they are protected from it versus living with it 24x7. Sure they have to live with me 24x7 but not my disease that is for me to do.

So when they come with questions I will gladly open up and share but I hope to never be connected in that way with them. (insert a soft warm grin from me here) That's why I have you friends!

I think when I was first diagnosed my family were shocked. Mainly because they thought I was too young to have RA. Luckily my husband and I spoke nearly everyday about it. He read up about it on the internet and my children who are teenagers talked with us about it. It made us all feel alot more in control of the situation I think. Talking really helps and maybe your family need time to let all this sink in. It's probably a tough one for them as well you to handle. I hope it gets better. *hugs*

Hello Rose, In my family it is a mixture of acceptance. My husband is trying to learn as much as he can and sometimes goes overboard with the helping. My one daughter seems to be in denial and my other daughter asks questions. I think my mom and dad are just relieved that there is finally a diagnoses and I'm just not a pain killer addict. My son is the best though. He's accepts me as I am and has the attitude that I will adapt just like I have with other downfalls in my life. I'm still mom, just packaged a little different.

I had my Husband go to the Dr. Appointments with me so he could ask him questions which he did. He is still not sure how to handle the whole thing,because somedays I feel so good like my old self again and then the next day I'm out of commition and just resting. Thats why they get so confused, just as we do.

Thank you all for your input and insights on how this effects our families and ways to handle this aspect of the disease. It has all been very helpful to me. I know I need to give it some time, but I have always been the "point person" in the family, so sometimes I see it as my duty to make things right for everybody, but I know we all have to find our own way with this. This DS family has really been a lifeline for me and I appreciate your support. Keep me in your thoughts as I had a mega migraine early this am, haven't had one in 5 months, since before the RA hit me. The Zomig didn't work and I relied on two vicodin for relief. The pain finally lifted midday, but I'm scared it will hit again tonight. I really don't know how I can deal with migraines on top of RA but I may have to find a way : ( . I had them for 18 years before the RA dx. Thanks again everybody and goodnight!

Hello Rose. I have been DX'd with RA for almost 3 years, but Dr. thinks I have had 8. I am definitely a type A person. I would go a 100 miles an hour everyday. That all came to a screeching halt with RA. Talk about a shock for me, my family, my friends, my co-workers. Like everyone that gets to own RA, I had to go through the grieving process. Guess what, so did my family and friends. They were grieving the loss of the old me and all that I used to be able to do. I have an 8 year child that had a rough time understanding why Mommy just couldn't do all she used to do. My husband refused to talk about it and even told me not to talk about it anymore!!!!! The whole family went through the grieving at different speeds and stages because everyone handles this kind of life changing disease at their own pace. My daughter is now very understanding and way too over-protective of me. My husband now goes to Dr. appointments with me, reads all he can about this beast and even helps around the house now. He admits that he was in denial for a long time and was hoping it wasn't true. This process is very hard on everyone involved, but you will all make it through it and become a stronger, closer family!!!! It dies get better!!!!!! My best advice would be to take care of you and let your family members go through this at their own speed.