how do you get the point across to family about what ra really is?

Tell them it is not just arthritis but an auto-immune chronic debilitating chrippling disease with no cure. That sounds bad but with proper medications, exercise and less stress it can be controlled. It is important to have someone to talk to who understands. I have joined cafemom.com which is an online support group for ladies with RA. Many have asked the same question you did.

 Mom's dealing with rheumatoid arthritis

 

Take care and if I can help let me know. Bon

I just simply told them what dr told me...i don't understand a lot of my RA conditions myself,so i just tell my family what dr tells me after each appointment...they will understand once they see the difference between your good and bad days...my children were young when i was diagnosed,now they're are grown...but they will know what they can and cannot do as far as childs play,just by watching your facial expressions...no child that i have ever known wants to cause mommy or grandma pain...RA is different for everybody who has it,and it's ever changing with it's symptoms,so some advice from someone who has been dealing with RA for years...keep all appointments,take your meds(if prescribed),and exercise as often as you can...

Hmmm.... I'm really not sure, but if someone else knows the answer, for God's sake let me know!!  It really is a sad irony that the people whom we most need to understand and be supportive are sometimes the most clueless.  I will say in my personal situation, time itself has helped. My husband's initial response scared the crap out of me. He was himself in denial and got borderline nasty with me whenever I wanted to even talk about RA.  Thank God he has since come around. Still, truth is family also go through a grieving process with our disease as well.  Trying to push them past whatever their own stage of grief happens to be in order to have them "catch up" to ours is tricky business. 

 

Right now I have an aunt and a husband who are with me, and two sweet little kids who do their best.  My father in law just last week asked me if I was done with the meds yet and if I'd gotten this "all cleared up" now.  I wonder if he's under the impression I have some wierd veneral disease or something!  The rest of the family just thinks I'm being a huge drama queen and that REALLY hurts.  Right or wrong, with them I'm just kind of giving up.  I don't have much energy as it is, and what little is left is far too precious to spend beating my head against a wall.  Frankly, I suspect the harder I would try, the more credence I'd give to their "drama queen" theory anyway!

 

The ones who want to understand will read stuff and ask questions and actually listen to your answers.  The rest.....you may need to determine how hard you want to try.  Still, give it time!  You may find people you never expected who can pleasantly surprise you too!

I emailed my children the Arthritis Foundation website and the Wikipedia site on Rheumatoid Arthritis so they could learn all about this disease.

Dear Tammy:

   You sit down with your family and explain that rheumatoid arthritis is a systemic disease that affects the joints and causes fatigue. Tell them that there are certain things that you wil no longer be able to do.(For instance: carrying children around or up and down the stairs, doing some household chores, walking long distances.) You may have to make changes in your schedule. Only you know what they are depending on which joints are involved and if you are in a flare up or have chronic pain.

Explain to them that you may need help (depending of the extent of your disease). For instance making a big family dinner you will need help. I learned the hard way by not explaining in the beginning and was critized for not doing things fast enough. Also tell them that fatigue is part of this disease and you will need to rest for a certain part of the day.

 

   Rheumatoid Arthritis is not a fun disease and the problem is that in the beginning you may look perfectly normal and no one will realize you have it and expect more from you than you are able to give.

 

Good Luck,

 

Galen Gilchrist

 

 

 

This is a question I am wrestling with as well. I was just diagnosed this week, and my family is having trouble accpeting it. I am unsure of how to describe my feelings and emmotions on the subject. I am not one to complain about pain and discomfort so they don't understand how I can have a disease like this. It is frustrating because sometimes all I want to do is sleep and they just don't realize why. I would love an answer to this question as well!

My husband seems to get it.  He watches me struggle and hurt so he realizes pretty much that it's making me miserable.  I have three daughters and a son.  The daughters seem to recognize it and have done some research to try to understand more about it.  My son has never mentioned it.  He pretends that there is nothing wrong with me. I have no idea how to change that so I don't try.

If anyone asks me what is the hardest thing to come to terms with about this disease, pain, change of lifestyle, come down the list.  I am 59 and was diagnosed at 45 approx.  I have never married, so have been super independent all my life.  I have never asked for help, either financially or emotionally from my family.  So they have always seen me as this very strong woman.  So trying to explain to them this complete turnaround, albeit gradual, but now galloping, has been a titanic emotional journey.  I left it too late, and should have bit by bit eased them into it.  But I was my own worst enemy, refusing to explain on a continuing basis every little nuance.  So I hid away.  Not a good way to go.  I have to live with this condition, that's hard enough, but I should have let them know up front, everything but the kitchen sink.  Dont close doors, dont grab me, dont tighten lids, dont tighten taps, whoever invented glass sliding doors is going to die soon.  I cant make plans, never know when I can walk or not.  The list is endless.  But hard for people who are surrounded every day with family members, kids, husbands etc.  I have created my own little Utopia, but a lot cant.  Parcel them all up and take them with you to the doc/rheumatologist and get him to explain, they love doing it, everything.  They come from a purely clinical direction.  I couldnt do it on my own, so I organised this also.  Have I had results, yu betya.  I have an amazing Rheumatologist from Sydney, Australia, Prince of Wales Hosp.  Get him involved, he's an integral part of the journey.  

 

Yur friend Downunder, Carolyn  

Unless they are willing to listen and accept it, I see no way.  I suffer daily from pain. My family knows that I suffer daily with pain.  The catch to this is as long as it doesn't interfere with their life all is well. 

Yet when they have to stop to help me and they have other plans problems arrise. They don't mean to be selfish like, still they want to live their lives too. 

There has to be an agreement made and understanding that a few toes will be stepped on along the way on both sides.

Good luck. I don't know if I helped or confused you more.

Rose

 

Right now i just printed what you guys had to say, and i'm gonna leave it for my son and daughter-in-law to read. maybe hearing it from else will help them understand what i'm going through. the thing is to get them to read it now. everyday is always stressfull, and i never know from one day to the next which part of me is going to hurt the worst, or if i can walk or not. my family acts like they really don't give a hoot, and they certainly don't understand when everyday something different is hurting. i sound like a hypocondriac. and sometimes i have to say, hey you guys i really can't do these things i used to do. I sure wish i could though.

hi tammy,

looks like there is no right or wrong way.  i read everyone else's responses, and i'm on the same bandwagon.  recently diagnosed, 2 months now, i'm still kinda in grieving.  i can't imagine living YEARS with this rotten disease, but yet, that's my life sentence.  my husband i think is in denial too but i THINK he might be coming around a little. he had no interest in the beginning, thought it was just 'aches and pains' but i think that because of our large circle of friends concerns, he might beginning to understand this is for real.  i'm not fakin' it, looking for attn, or in amy's words, being a drama queen.  just this week, i've noticed in the middle of the night, he pulls the covers up around me and tucks them under my chin.  i almost cried the first time he did that because that was a 'breakthrough' moment.  he didn't know i was awake and now it's a nightly thing.  he's been considerate of my 'daily aches' and is being patient about it.  he doesn't frown much when i can't ride my motorcycle becuase my hands are too stiff.  i guess i just have to be patient.  the rest of my siblings haven't addressed it but my parents are sooo caring.  mom calls me all the time and the first question is 'how are you feeling'?  i was frustrated in the beginning but maybe it was my impatience that made it worse.  hang in there.  maybe they'll come around like mine are.  ~desiree

This should be question of the decade, not question of the week.  I usually just refer them to websites such as WebMD or medicinenet.  I've gotten totallly frustrated try to explain to family members and co workers just how serious this disease is.  My wife was diagnosed about 3 years ago at age 37.  Good luck to you.

I was diagnosed about 4 yrs ago and they still don't get it. I've tried everything.  I have no support system and get no help.  I think it really helps if your family truly loves you and doesn't use you.  My husband's idea of help is to take HIS laundry only to the station and do it.  Or he's okay that I don't cook dinner every day.  The dishes sit for days until I do them.  I may as well live by myself, in fact, that's not a bad idea.  If I could afford it, I would.  My rhuematologist still hasn't found anything that works for me.  If it helps with the pain and swelling then it turns out that I can only tolerate taking it for a short time before I end up suffering from severe side effects.  RA isn't my only health problem.  It was just the icing on the cake.  In fact tomorrow I'm calling to get back into therapy for severe depression and post traumatic stress disorder.  I fear that if I don't I'll totally give up all together.  Wish me well.

My advice and the only way I got it into my familys heads, was to bring up "MyRA central. com" on the computer & let them read the description & all the side effects. After they finished there was an understanding that this was not "Grandmas old achy knee forecasting snow". They are know more understanding as to why I am permanetly disabled, and unable, on some days, to just get up & walk.  I was diagnosed with RA in June 2000, and have yet to find the combination of meds to keep me out of "flare ups". Good Luck & Stay Focused.

Hmmm.... I'm really not sure, but if someone else knows the answer, for God's sake let me know!!  It really is a sad irony that the people whom we most need to understand and be supportive are sometimes the most clueless.  I will say in my personal situation, time itself has helped. My husband's initial response scared the crap out of me. He was himself in denial and got borderline nasty with me whenever I wanted to even talk about RA.  Thank God he has since come around. Still, truth is family also go through a grieving process with our disease as well.  Trying to push them past whatever their own stage of grief happens to be in order to have them "catch up" to ours is tricky business. 

 

Right now I have an aunt and a husband who are with me, and two sweet little kids who do their best.  My father in law just last week asked me if I was done with the meds yet and if I'd gotten this "all cleared up" now.  I wonder if he's under the impression I have some wierd veneral disease or something!  The rest of the family just thinks I'm being a huge drama queen and that REALLY hurts.  Right or wrong, with them I'm just kind of giving up.  I don't have much energy as it is, and what little is left is far too precious to spend beating my head against a wall.  Frankly, I suspect the harder I would try, the more credence I'd give to their "drama queen" theory anyway!

 

The ones who want to understand will read stuff and ask questions and actually listen to your answers.  The rest.....you may need to determine how hard you want to try.  Still, give it time!  You may find people you never expected who can pleasantly surprise you too!