Wednesday, October 01, 2014

Sunday, August 22, 2010 groverkitty, Community Member, asks

Q: How do I fully explain what having RA is like to my family who just don't get it?

I've fully explained what RA is to my family. They just don't get it, or they don't believe me. For example: the day after I went to see the rheumy, my sis asked me how it went. I told her that I had a cort. injection into my pinky toe. She looked puzzled and asked me why. I said for my arthritis pain. She said, yeah, but why in your pinky? I told her because right now that is where it hurts the most. She just didn't understand and asked why it hurt there. I said because I have RA and that is where it hurts. I told her it feels like it's broken and she said, ouch...really?? Every time I talk to her about what I am going through it's like I have to start over. What do I do? Should I just forget it and not tell her anything? Also, her bf has MS pretty badly, and she acts like if it's not MS related it is meaningless. I try to be vague and not fully explain things every time, but then I get my feelings hurt because it seems like she just does not care.
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Answers (12)
Lene Andersen, Health Guide
8/23/10 9:10pm

I think there are a couple things going on with your sister. First, she's in a position where her boyfriend is hit very hard with MS and depending on how involved she is in his daily life - do they live together? - and with helping him through it, she already has her plate full with chronic illness and devastation in somebody she loves. She may not have the emotional room to listen closely. The second thing is that it sounds as if you're being so considerate of her stress that you are not being honest about what's going on in your life. Being vague, not fully explaining things guarantees that she (and other members of the family) won't understand, which again guarantees that you will be hurt and feel alone. When people are busy with their own lives or caught up in helping someone else with a chronic illness, it can make it hard for them to hear you, especially if you're careful about how you phrase things.

 

I'd recommend that you go out for a glass of wine or cup of coffee and dessert with your sister and talk. Tell her what RA is, refer her to this site, especially our section on the basis of RA for general education and then start talking about how it affects your life. About what it feels like to be in pain, how it makes you feel alone and isolated (I'm making an assumption here and am reading between the lines in your question). Check out my post about the Spoon Theory, which can help explain the impact of living with a chronic illness. The good thing is that since her boyfriend has MS, she's already halfway towards knowing what a chronic illness is like and since both MS and RA are autoimmune diseases, you and he probably have quite a bit in common. You can also be resource to her by referring her to our MS site, which can be a good community for both her boyfriend and her in terms of learning more about the disease and finding support.

 

I think the two of you have a real opportunity to bond - if you'll excuse the expression - in terms of chronic illness and how it can affect your life and if you lean on each other, can help each other talk to the rest of your family. However, it means you need to be honest and that you need to be patient - developing this bond between you in relation to this may take some time and you need to be prepared for her not being able to hear what you're saying at times.

 

keep us posted on the progress, please?

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Irishgirl78, Community Member
8/23/10 12:05pm

I have had the same problems with my family. I feel like my husband doesn't believe me. Its like he's thinking "just suck it up". I'll be interested in the answers you get.

 

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BerserkeRA, Community Member
8/23/10 4:45pm

Describe this to your husband:

 

Tell him RA pain is like having a railroad spike driving through your joints.  Tell him you know a big powerlifter (former powerlifter I guess) with a strong stoic tradition who is devastated by RA pain -- laid out, dropped down a well, obliterated.  There is no "sucking it up" -- and I'm a guy who could always suck it up and keep moving.  Nothing compares to RA -- not being cut, not breaking bones, not being shot.

 

I'd be happy to chat with him if it will help.

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ronie, Community Member
8/23/10 4:18pm

#1. Do not hide your RA. It is a part of who you are now. A much larger part of you than you may want to admit. It also cannot be discounted by calling it plain "arthritis."  Rheumatoid arthritis is an entirely different creature. And wherever you go, your RA will be with you. 

#2. Please to not be ashamed or afraid to talk about it until your head pops off.  When a subject is not in the open, it is forgotten/swept under the rug.  Your RA is like a spoiled child and will not let you forget it is there.  Talking about it will help you to adapt, cope, live with it.

#3. It is not that she does care.  She does not understand.  Truthfully, everyone in the world is selfish to some extend.  I am, you are, so is your sister (or for those listening and wanting know, so is your husband).  Because of this selfishness, she may not be paying enough attention to see/hear the big picture. So by being vague you are indeed having to start at square one everytime you explain something.

 

There is a story called, The Spoon Theory.  Most women in your family will understand and a lightbulb will go off for them. You can do a keyword search on this site for the story. 

Also there is www.rawarrior.com.  The woman who blogs on this site is very educated and has a great way of explaining things so that people can understand without sounding like a text book.  There is a section on that site that helps Non RA'ers.  The Spoon Theory can also be found on her website as well as here.

 

Sometimes for men to understand it is more difficult especially without a hammer to spash their hands and/or knees and feet while they sleep during the night. (This a joke, not a suggestion.) Most men who DO get a true grip on the situation, usually have a mother or other family member who has some sort of chronic ailment. Other men are simply attentive and loving enough. (a rare breed and should be appreciated and held on to tightly.) 

You cannot overlook a man's macho factor.

 

Except for swelling and bloodwork, RA is an invisible disease and it is difficult for people to believe what they do not see. I too am one who says, "seeing is believing." But perhaps since your sister has a bf with MS, you can explain that they are both autoimmune diseases, or cousin diseases.  Plus there is the factor as to whether your sister sees you every day in order to witness for herself what you are going through. Remember, outa sight, outa mind.

 

In order for Karen (my partner) to fully understand what she was getting into before we started our relationship, she did a lot of internet research.  She looked at the pictures, read the articles, ordered the books and listened to me explain.  At the time, I was completely healthy, active, and even athletic.  However, during that first year, my health took a turn for the worst. She did not fully understand until the one morning she had to help me out of bed, help me to the rest room, help me wash my hair and help me to brush my teeth, then get dressed. During this entire episode, I cried with ever little movement she helped me with, cried from pain and embarrassment. I had never wanted for anyone to see me helpless like that.

 

However, because we all have our different severities of our RA, you may not be able to identify with my story. 

 

It is extremely important to educate yourself, partners, family and friends about your RA.  For those who do not want to do the reading, websites with pictures help the most.  The biggest hurdle is finding a way to explain that our disease and our pain, makes us extremely tired and even depressed (which is like a snowball effect.) This is generally where we have a hard time with people (and ourselves) thinking we are lazy.  We are not lazy, we are in pain and exhausted.  Between our RA and our meds our insides are going a mile a minute.

But sometimes we push and push ourselves in order to not feel or look helpless.  And yes we do "suck it up."  If we didn't we would never get out of bed. However, while we are pushing, we are not allowing others to see our true feelings and we are also hurting ourselves physically and mentally. And some days we just can't suck it up enough, no matter how hard we try. (That is usually when I get my hammer or softball bat out and threaten to crack some bones so people will understand.) 

 

With that being, yes we get very angry somedays.

I have a friend (she is actually an ex so she knows my condition) who trully believes if she makes me angry enough, I will hop my ass up and do whatever I need to do.  Some days it works.  But there are many more days when I have to look at her and say, "until you have been hit by a car every other day of your life, do not assume you know how I feel." 

It took a while for me to understand that she trully believes that getting my blood boiling is good therapy.  I cannot change her way of thinking, I can only push her to the side and change the way I think or feel. (hence she is my ex). Besides why do I have to be pain and pissed off.

 

Perhaps your sister can become more acquainted with your RA if she goes to the doctor with you.  

Perhaps she can help as a caregiver during a bad flare up so she can see.  

Karen gives me my cocktail of meds twice a day (I issue the mid day meds for myself).  She says (she takes her own blood pressure meds at the same time) it reminds her that my RA is there and has to be controlled just like her bp. 

 

But again, all that goes back to education, for yourself and those you love.  Do the searches and maybe they will look over your shoulder at the computer screen.  Print out information that touches home and put it on the fridge beside the colored pictures from your children.  Talk about it til your blue in the face, it is your history and your future. Remember They can't see the "broken bones you feel"  But they can see you stretch, moan groan, rub your aches, cry and scream. 

 

Let me know if you need any help with keyword searches. 

Ronie

 

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ronie, Community Member
8/23/10 4:19pm

WOW sorry that was so long.

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BerserkeRA, Community Member
8/23/10 4:39pm

Here's a second vote for Spoon Theory.  I use it all the time to explain the fatigue and general malaise.  It is an immediate light bulb moment for most people.

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BerserkeRA, Community Member
8/23/10 4:37pm

RA is a strange disease, and one that is very difficult to understand.  Part of the problem is that most of the time, we don't look sick, we just moan when we move...

 

About a year ago, it became painful for me to use normal silverware.  Of course, my wife found that great OXO stuff, and I use that.  When I was diagnosed, we explained to everyone in my extended family that I had RA.  My mother-in-law, never really seemed to get it, until we were on vacation at my parent's house over the summer and had forgotten my silverware.  She saw me trying to use a regular fork with a bunch of paper towels wrapped around it and asked if the touching metal hurt.  I explained it was all about the diameter of the silverware and closing my hand that much.  She finally understood that RA is not like a mild form of OA.

 

Honestly, my wife says explaining that I can no longer use silverware seems to get most people's attention.  Even so, people recommend I take Alieve everyday, or ingest shark cartiledge, or wave magnets at a mirror in the snow...  You know :)

 

I've recently had to have my Mom up to help out.  I think the biggest thing that has helped her to understand my plight is me asking her for the help, and then *not* putting on (much of) a brave front while she's been here -- actually letting her know the dark dirty secret about the pain pills in the cabinet that I can't get out of the pill bottle for myself...  Things like that.

 

Unfortunately there is no simple and easy way to make people understand.  I've heard it said around here, and I believe it, that to truly understand RA, you have to be taking methotrexate :)  Even some rheumies don't really understand.

 

Here's the good news.  WE understand.  We're always here, too. Laughing

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gina5595, Community Member
8/26/10 8:50pm

I agree! I also love when you tell people that you have RA and they say, "Oh, I have that too in my finger" Are you kidding me? Seriously? Most people don't have a clue. I am so very tired right now and I have no reason to be. I am going through some med changes and it's workin' on me.

Anyway, I liked your comments to the post.

 

Gina

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andrew, Community Member
8/24/10 12:03am

It may take a while for your friends and family to understand. And even then, unless they experience RA themselves, they'll never fully understand. I suggest you use RAGuy's 60 second guide (see link below). Print it up, post it on the fridge, share with everyone. It's the best short guide to RA and has nice graphics.

http://www.rheumatoidarthritisguy.com/60-second-guide-to-ra/ 

 

Andrew

http://livingwithra.wordpress.com/

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ronie, Community Member
8/24/10 3:53pm

the arthritis guy is cool!!!

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sunshinegal43oh, Community Member
8/25/10 9:47am

I don't have trouble with my family understanding, I have trouble with my co-workers/bosses/human resources understanding! But it's the same thing that everyone else has said. You don't look sick, so you aren't sick. In their minds! I think with the new changes to ADA laws/regs that my HR department is starting to come around. Maybe. I still don't trust them. Every time I miss a day due to RA I provide documentation, explanation, etc. Doesn't seem to clue them in any better. Although last week I did get a note from our wicked HR manager saying, "Sure, you can have FMLA. I understand that your condition is quite painful." Wow! No sheet Sherlock! LOL

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Deana, Community Member
8/26/10 7:35pm

Dear groverkitty,

 

Sometimes it just doesn't seem fair that we are sick with RA and it is up to us to make everyone else understand what that means if we want their support and understanding.  There are some who will get it and some who won't and it is just like friends who get you and friends who don't - you just keep on moving.:-)  Will this make you sad - oh sure, but you are going to be a survivor and these people are not going to drag you down.

 

The way I try to explain RA to people is by saying have you ever needed a root canal and most people say yes worst pain I ever had.  Well there you go - something they can relate to.  Then I say imagine your whole body being in that much pain and how exhausting it would be because there is no root canal coming to make the pain go away.  Think about how much sleep you would loose and how desperate you would become to have some kind of relief.  Then add to that that you have trouble walking, climbing stairs, and using your hands and just the slightest touch sends pain shooting.  Think how scared you would be that it was never going to end.  Think of all the people around you thinking you are lazy, fat, or faking for attention and no one is helping you.  Then how would you feel when you go from doctor to doctor and there still is no immediate relief and if there is some relief it is only temporary and any minute the pain will return and you will have to deal with it all over again until finally your doctor or you figure out the magic combination of drugs to make it somewhat better and after all of this you have totally exhausted your entire body and lowered your immune system to a dangerous point and again after all this the drugs stop working and you have to restart your search for the Holy Grail of medicines all over again to make it better.    Then smile and say welcome to my world.:-)  p.s. you can add in the various joint and back surgeries and medication side effects if applicable.  Phew!  I'm tired just typing all this.  After all this if they don't get it they never will . . .  (That's why we are here for you:-)

Hope it helps,

Deana 

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Ruth, Community Member
8/26/10 7:58pm

I have been living with RA for over 12 yrs now. When I got hit with RA, nobody understood the disease, including myself. All I knew that it was a crippling disease and it happened to "old" people. So when I got hit with it at age 36,  thought they were mistaken.

It has cost me my marriage because my ex wanted to cure the disease and not help understand the disease and help me. He couldn't accept the fact that I was now not healthy and that I couldn't do the things I used to be able to do.

There is an abundant amount of information out there that there is no excuse for anyone to NOT understand it. Have them go to your next RA dr. appt. with you and have them ask questions. There are alot of ignorant people out there that just don't want to know. That goes the same for any other kind of chronic disease.

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Ms Terry, Community Member
8/26/10 8:24pm

Don't feel sad--both my husband and my 48 yr old daughter JUST DON'T GET IT....

Just about every other day my husband says..WHAT THE HELL IS WRONG WITH YOU...or my daughter who lives 2,000 miles from me-says--WHY DON'T YOU COME

HERE FOR A VISIT.....and my friends always ask--ARE THINGS GETTING BETTER?

Like some magic Dr visit will make it all go away.  Sometimes I think I should

start telling everyone I have Cancer--than maybe they'll get it...

HANG IN THERE AND TRY TO LAUGH AT SOMETHING EVERYDAY...TerryWink

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groverkitty, Community Member
8/27/10 9:58pm

I have read each and every one of your posts! Thank you to everyone who helped :) I finally feel like I am part of a community who gets it!! I hate to say this, but I feel so lucky that my husband has psoriatic arthritis. He actually gets it! Tho I have watched him go from real bad, to really really bad, to better. I don't have that luxury. I haven't found a "magical drug combo" that has worked bc nothing has. I take 10 mg percocet every day and that barely touches the pain. I'm on my feet all day and my doc wants me to try methadone which freaks me out bc I've read horror stories of that drug! 

 

As for my sister... you are right, she is maxed out bc she has to deal with her bf (who she's been with since jr high) who has MS. She doesn't have room to deal with any more disease in her life. That is partly why I "play dumb" and pretend that nothing is wrong bc I know she does not get it, and probably never will. She is really hard on her bf for having MS and I don't need her to be harder on me bc of what I can't do in her eyes. I don't need the extra stress. 

 

The spoon theory did hit home... it was so accurate to what I exp every day. Just going to a store to shop for 30min wears me out. Going to work for 8hrs drains me to the point of tears. I am severely depressed and anxious bc of all this added stress! It's so hard sometimes and I'm glad I have a place to go to talk about what I've been through and continue to experience. I can't wait to find a drug that helps and continues to help! I have to tell myself to keep going bc I'm not going to let this disease take me down...no way!! 

 

Keep the responses coming, I love reading them :)

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V, Health Guide
8/28/10 9:59am

I don't think anyone can really understand RA or any other chronic illness unless they have it.  They can be considerate and supportive, and that is a blessing.  Getting them to that point can be a difficult task.  Most people are so caught up in their own lives and problems, that it is difficult for them to understand something like this. What I look for, is a little support when I need it from my husband, and I get that.  I as so thankful for his help when I need it.  He doesn't make a big deal out of it.  We do more things together than we used to because I need the help.  That is a postive thing that has come out of this whole situation.  As for the rest of my family.....my sister calls and........well, let's just say the entire conversation is about her. She doesn't have whatever it takes to show any concern or caring for other people.  That is just the way she is. I am older than she, and I have always been the stable "rock" in the family.  That is why our elderly folks live w/me.  They also look to me as the "rock", so to speak. So, as I get older and have more of my own health issues, it can be a bit of a strain. I am lucky to have a loving husband, for which I am most thankful.  My faith also sustains me. I didn't really give you an answer, because I don't have one, but please know that the people on this site do understand, and do care.  Try not to expect too much from others.  Some people just don't have what it takes to understand.  They aren't trying to be mean or cruel.  Like you said, they just don't get it!  Best Wishes, V

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ROBINCAROL, Community Member
3/ 4/11 5:59pm

I KNOW EXACTLY HOW YOU FEEL.. IVE GOT RA, FIBRO.& OSTEO ARTHTITIS. IM HAVING TROUBLE SLEEPING I TOSS & TURN MOAN & GROAN... KEEPING MY HUSBAND AWAKE.. I DONT REALIZE THAT I DO THIS.I TOLD HIM TO KNUDGE ME & ID GET IN ANOTHER BED SO HE CAN REST.. IM TRYING TO GET MY DISABILITY BEEN TURNED DOWN 2XS.. HOPEFULLY I WILL GET IT SOON... KEEP URE HEAD UP HIGH GOD & I ARE WITH YOU.. ROBINCAROL06

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ROBINCAROL, Community Member
3/ 4/11 6:15pm

I AGREE WITH YOU ALL NO ONE WILL UNDERSTAND HOW YOU ARE FEELING... MY RA DR HAS CHANGED MY MEDS NUMEROUS TIMES..UNTIL OUR RELATIVES EXPERENCE WHAT WERE GOING THROUGH THEY WILL NEVER UNDERSTAND.. I AGREE THEY DO ACT LIKE WERE LYING.. ONLY WE REALLY KNOW HOW WE FEEL AND WHAT ITS LIKE... ROBINCAROL06

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By groverkitty, Community Member— Last Modified: 03/04/11, First Published: 08/22/10