How do you deal with the indifference from others?

By Feels like the TinMan Sunday, August 10, 2008

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I was just recently diagnosed with RA (3 wks ago) by my PCP but not yet by the Rheumatologist. I'm on relefen for starters until the rheumatologist (i haven't claimed his as MY rheumatologist yet) is 'convinced' i have RA. (my PCP is, and so am I) i had my first appt with him, and of course, it happened to be on a good day. he's not 100% convinced because the physical exam wasn't indicative (because i didn't have much swelling, joint pain that day). anyway, my husband isn't too interested in learning more about RA. he doesn't really seem to understand the pain that i'm in. i feel so alone! if i mention my shoulders are painful or something he'll comment how HIS shoulders are always sore, etc. blah! he told me one day (in front of my BFF, who does understand) that i was "milking this thing". when i told him that he had no idea of what i was going thru, or what this RA was about....and what's it like to be in the pain i'm in ALL THE TIME. i told 'excuse me for taking some of the limelight away from you and your diabetes'...i was so mad, i just walked out of the room. i've decided i'm not going to say anything more about RA to him, or discuss my dr visits, or anything. i'm angry that i have to deal with this, and with his indifference. has anyone else been thru? how did you deal with it?

new pains!!!

Comments (16) | Add comment

Goodeggslightlycracked

8/10/08 8:05pm

Hi There!

I was diagnosed with RA 5mos ago. I remember those first few weeks of mine. My news of my health to my family was met with scepticsm. I have 4 daughters all 20 somthing. When I told the youngest I was so exhausted that I felt like collapsing on the spot, she told me to get more sleep. They compared my pain to their pain from over exercising. It was only when the oldest came to see me and I was sitting on the couch, rocking back and forth, tears running down my face that they grasped that this was different....not an ordinary kind of pain. (And also upon hearing me wake myself in the night, by crying out in pain.)

I remember when I was about 19 and someone told me, we needed so much research for this disease. I thought what's the big deal? So old people hands feel sore and get stiff? Isnt that what happens to all people as we age? How insensitive and ignorant I was. Since then I have learned compassion and have become informed about the horrible diseases of this world....that they dont strike just elderly persons....that their hands were PAINFUL, not just sore.

I have learned that unless we, or someone close to us has experienced a physical disfunction, we can't understand or "feel" their pain. I for instance have never had a broken leg, or a spinal tap and I can honestly say I dont know how that feels. But since feeling the pain of RA in my hands, I now know the difference between "normal" pain and RA pain.

I guess what I am saying is, hopefully with time your husband will observe for himself what is going on with you and respond as my daughters have with compassion. In the meantime, come talk to us here. I have found some really cool people, with awesome perspectives come here. Some quite funny too! (hey all, hope this isnt too long...)

Feels like the TinMan

8/11/08 10:52am

i was lucky to find this website. i am learning that i'm not the only one going thru this, and that my symptoms are very much like everyone else. i met another gal in the group i ride with who has it, so she's kinda gonna hold my hand (so to speak) and help me get thru it too. i'm scared of what my future holds (or doesn't hold). i just need to accept my life sentence. everything you said is true. i get tired of hearing how other people tell me how they get the arthritis too. sometimes i just wanna scream!! thanks so much for listening.

Connie Diller

8/11/08 5:54pm

Hey feelin' like a tinman...I've been on the RA ride for over a year now. My hubby dropped his bike four years ago & broke both shoulders and 17 places in his ribs....he knows pain. We have been going through pain together. RA & broken bones aren't really the same pain. Broken bones heal and quit hurting after awhile. Shoot, not to be rippin' on your hubby but diabetes pain? My family has a long line of diabetic's. Those shots can't touch the pain of a Humira injection.... Life will adjust...the hubby will adjust & so will you....life is good;) You are a survivor my biker friend, you will ride this disease with the wind in your hair, have faith..Prayers go up Blessings will come down.... Peace out, Connie

Feels like the TinMan

8/11/08 6:53pm

connie,

can i have an amen sistah?! sorry to hear about your hubby and his broken bones. that's a drag alright, although the busted up bike would be more heartbreaking! as long as i can still ride, i can run away ...just me, my bike and my IPOD, i can head out to the desert, take in the scenery and ride with my knees in the wind and without a care in the world....

thanks for the encouragement!

Sue

8/11/08 8:43pm

hello,

I am 43 as well, and my family had a hard time usderstanding this. My Husband wanted me to get that walk fit in my shoes so everything lines up and the pain will go away.

I had to explain to him it would not help me. He then told co workers what I have and it was then he found out what this RA is all about. As co workers would say things like, "oho no that is such a shame I hear that is so painful!" and " you are going to have to help her through this painful time". Thanks to the TV he started seeing more on RA, and learning more about it. Now he really understands. He does share some of my fears, but tells me what we will do to make everything work out. it has taken 7 months for him to really understand this. At times he is so mad I have to have this pain and feel useless in taking it away from me. Now my Daughter is 16 and she understood right away, because of what she has seen on TV. She also sees what my sister goes though with having Lupus and we still are not sure if I have that as well.

I wanted to ask you, did your PCP do blood work? Did he do an RA factor test? My PCP took all my blood and test for everything you could think of. My Lupus came out neg, but my RA factor was very high. He took the test twice and both times it came out high. By time I was able to see a RA doc I was in so much pain I could not walk. The rocking yourself and crying is something I did a lot of. It is nice to see I am not alone in doing that. :) That is the main thing here, YOU are NOT alone! We are all here and everyone in this group are such wonderful souls. I would be so lost without them.

WE hurt together, cry together, laugh together and understand like no one else can..

So Like you were told come on here.... Also, the more you learn about Ra the better.

This way you understand the drugs out there, and what is going on in your body. the test they need to do. All of this I feel is needed.. This group can help alot with that as well as google RA and read..

you hang in there it will be ok :)

hugs

Sue

Feels like the TinMan

8/12/08 11:04am

thanks sue! i think the hardest part is not having the support of my husband. he just thinks 'it's just arthritis'. he has no interest in reading or learning about it. i printed a bunch of stuff off this website, and handed it to him and said, 'here...read this, in case your interested'. my cousin (who has lupus) said he's probably scared because i'm the rock in the family, i hold the fort down, etc and it scares him to think that i may not be able to do FOR HIM anymore. whatever the case is, i need his support, his understanding and his compassion. he refuses to even discuss it, and if i mention i have any pain at all, he changes the subject. so, i've turn to this website, and i'm finding the support and encouragement. my mother is very understanding and sympathetic and assures me that SHE'LL take care of me...MOTHERS.... =) ..anyway, being in limbo with the rheumo is frustrating on top of all this. i have 2 1/2 weeks to go before i see him again. maybe then he'll be convinced. if not, i'll find someone else. i can't afford to wait any longer to get on treatment. i know my body, and this isn't 'normal'...but thanks to everyone who encourages me, and sends love my way. it sure helps me knowing i'm not alone! xox to all! desiree

Feels like the TinMan

8/12/08 11:12am

PS: my husband hasn't even told his family! his sister is a nurse, and she would know about RA. he's very close to her, and hasn't said a word. what is that about?? =(

Anonymous

8/14/08 1:37pm

Hi desiree, I know how you feel. My husband is the same way. He loses himself in work so he does not have to deal with it. I was just diagnosed 5 months ago and he's been in total denial. He's emothional inept so I guess I shouldn't expect anything. I take meds, exercise and look like I'm fine on the outside but I know my insides are rotting away. Don't know much about this rotten disease yet but the more I learn the worse it seems. There is very little support out there. Wish I could find a group or at least one other person that understands what this is all about. Exercise & Yoga really help me cope. Guess the bottom line is that women like to talk things to death and men don't hear anything after the first sentence. Sheila

Cindy Bostic

8/12/08 3:34pm

Sorry to hear your husband is so self obsorbed. He is going to have to step up and help you on some days. I also am a diabetic along with RA. I however am very fortunate to have a husband and family who support me and help me out. And let me not forget my friends. My husband keeps a close eye on me on my good days too so I do not over do it. Maybe it was when I could not get out of the bed, shower, sit on a toilet, brush my hair( and worse could not brush my childs hair), hold a cup to my mouth, without the help of my husband or children. Maybe it was the days and nights he watched me crying while I was sleeping. I hope for your sake that it does not take that for him to realize what RA really is all about.

Maybe leaving books on RA around the house would help, maybe he might pick one up and find out a few things he needs to know.

Good luck to you in the future,

Cindy Bostic

Lorraine

8/12/08 6:57pm

Hi. I understand. My Mom - who is usually wonderful - cannot understand the difference between osteoarthritis and rheumatoid arthritis. I've tried explaining the part about being an autoimmuine (spelling???) disease but she does not get it and is forever showing me her fingers!

I try to be understanding, but this disease is a real nusiance what with the dr. visits, the blood tests and all.

Good luck to you -- it's good to vent!

Dorie Crews

8/12/08 8:30pm

Yes my hubby has the same indifference.

I still haven't gone to a Rheumatologist just my PCP doctor's assistant..she thinks I have it by the 45 reading on a test she gave me.

I don't think I have it.

Good luck to you..hang in there.

I only take Ibuprophen for my pain...and also Move Free which helps a whole lot.

Lots of Vitamin D and Fish Oil.

Dorie

Greg

8/15/08 10:07am

I have been thru the same problem with my wife. All I do is keep it to myself, deal with the pain and work to have the best life I can with my family. My son of 6 years wanted to go ice skating yesterday and I had to say no because I had to go with him. My wife does not know how to skate and became angry with me and my son sad because dad could not do what he wanted. It is something you have to deal with. I make the most out of life and keep the pain inside as much as possible.

Good Luck

God Bless

Feels like the TinMan

8/15/08 11:00am

hi greg...sux doesn't it? it's bad enough we feel terrible for not being able to do what we used to, but to put up with indifference. boo! oh well. we can vent here, and feel a little better at least until we have to get up and walk!!

jacabeans

8/19/08 6:47am

Hey Again, More in common than we thought, Hubby hurt his back day after i went to see RA clinic its tipical if i have headache he has tumor,its probably part of the reason i didnt pay attention at doc's or hospital,he's never asked how i'd feel if it is RA, my appointment is thursday like you am no asking him to come with me and not discussing it he'd onlyfind something to complain about or out do me with, my kids seem indiffrent to there like ah well, they dont seem to relise its running after them that take it out me,

Feels like the TinMan

8/20/08 11:16am

hey jacabeans,

your comments had me laughing...i know what you mean! (competition to see who has more pain)

well, things have slightly changed. hubby's becoming more 'aware' of RA. the other day we were eating dinner, and i asked him to pass me the pickles (which were in a jar) and he opened them before he passed it to me. i was surprised and touched. he's been massaging my neck (without me asking) because i've been having a lot of trouble with that, and i've lost full range of motion, so i move it like it's a stiff neck all the time. he still won't discuss it, and won't say anything about it. we were watching the olympics the other day and he commented that his shoulders hurt, and he said, "maybe i have RA too". i said, "if you did, you'd have pain all over, and you wouldn't be able to handle it'. i said, 'yours is rotater cuff or diabetic neuropathy'. he said, "yeah, it's not the same". ahh! acknowledgement! =)

peapops

10/ 5/08 9:44am

hang in there your hubby seems to be on the right track.And perhaps he dose have the onset of RA i know when I first started it wasn't as bad as it can get.

How do you deal with the indifference from others?

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