Thursday, July 2, 2009

Rheumatoid Arthritis Breaks Your Heart

You can file this under straight talk on Rheumatoid Arthritis.

I used to say, “Rheumatoid Arthritis is not in your head; it’s everywhere else. Then I realized that for some of us, it does get to the head. Specifically, RA gets to the jaw joints and the eyes. So technically, my Rheumatoid Arthritis is in my head.

So, I started to say it like this: RA is not in your mind; it’s everywhere else. But, lately I think I have changed my opinion on that, too. Rheumatoid Arthritis might actually change the way we think. Remember my very first post, RA can make you patient?

But perhaps it does not stop there. Rheumatoid Arthritis can also break your heart. My heart is broken by what I hear and read from other RA-ers who either post their own blogs or write private messages to me.

I have heard the ache of women who want to have children but live on medication which prevents that. Countless young ladies have told of their distress over aging much more quickly than they had planned. There are troubles with bosses who don’t understand and long-planned careers that have washed down the drain, courtesy RA. Of course there are the myriad beloved activities we are forced to curtail.

But the most heartbreaking tale that I hear is about family members who do not understand how Rheumatoid Arthritis changes the rules of the game. Women tell me they are accused of having “grown a lazy bone.” Men are distressed because their families cannot accept a lowered physical output with childcare or chores.

That is the dismay of living with an invisible illness. Pain is invisible. Stiffness and muscle weakness is invisible. One man wrote that his wife could not be convinced that his pain is very bad at all. Numerous women have told me that their husbands criticize them for their lowered standards. Just today, I read a woman’s comment about her grown son complaining of how little she can do for him now.

My heart is especially heavy for one person who may actually be divorced because of becoming disabled. This disaster is, one man or woman at a time, as bad as any I have watched in the news. It is no different than watching hurricane victims lose their homes. The suffering is just as real. But the sympathy is not.

My heart has become as sore as my wrists and hips and knees…

More than once, I have heard it suggested that we could expand understanding of Rheumatoid Arthritis if we could only loan it out once in a while. If we could let our spouse borrow it for a day, would s/he “grow a sympathy bone”? I know it is said in jest (well, probably it is), but I think there is a nugget of truth there, too.

Could it be that living with Rheumatoid Arthritis does affect your heart? For so long, I was perplexed that RA seemed to affect the nicest people. Maybe it was the other way around all along: the long term suffering of Rheumatoid Arthritis breaks our hearts. It makes us into more compassionate people.


MissDazey said...

I am missing something..watermelon?

Jonn Wolfe said...

It is extremely difficult to get this invisible disease understood by someone who hasn't the foggiest notion as to what it is like, living with consistent pain 24/7.

On the other hand, I happen to be luckier than most. My mother's side of the family all have one form of arthritis or another in addition to fibro, and I myself got the double whammy of rheumatoid and fibro. So my mother knows what this is all about.

And even though it's unfortunate, it is also a blessing that my wife also has the identical double whammy. The good days are when one of us needs help and the other can provide it. The bad days are when both of us need help and we're unable to help each other, much less ourselves.

I have three people that do not understand this disease: My stepson and his wife, and my stepfather. They say they understand, but you can tell by the looks they give and the look in their eyes that they both do not understand, and have placed blame... As if I actually conspired to hurt 24/7. It's infuriating.

I wish I knew of an easy way to show people just how bad this can be. The only thing I can think of, is that self torture chain that some people wrap around their thighs... as a form of penitence. You can only describe the sand, icepicks, red hot rivets, or any other simile that you can possibly think of, before your just too tired to give a tinkers damn what they think anymore.

So yes, it does affect the mind. Consistent pain that nothing gets rid of drains the psyche of the necessary mental stamina.

I could go on, but I think I'll stop short before I end up going into an utter rant.

Nice post. I can so relate.
~ Jonn

Kelly said...

Thank you for your thoughtful comments Jonn,

I guess it would not be as effective as the tortures you described, but I know a good blog your family could read to start getting a clue. :D Haha.

I cannot imagine both you and your wife being affected at once.That is incredible. God help you both. And like you said, at least she understands...

andrew said...

Thanks for your comments. I've felt RA in my heart this week. As some of my family are visiting this week, it's been interesting to see and hear their reactions to my RA. They said things, supposedly in jest, like "it's all in your head", "just suck it up", "everyone has arthritis", etc. They can't seem to understand why I have to inject myself with a very expensive, biological drug once a week. I've had to spend time trying to educate them, pointing out the problems. It was nice to see my wife jump in and help. They've seen a few of the symptoms affect me but it's lack of visibility for the most part (other than some swollen joints) makes it hard.

I'm thinking of something like the sympathy packs for feeling what's it's like for a pregnant women. Can we invent something like that for RA?:)

Kelly said...


A sympathy pack? BWHAHAhaha!!;D
Okay, like the torture methods Jonn described? or maybe a chemo dose to simulate weakness & fatigue?

You sure are blessed to have your wife go to bat for you and with you. And I can recommend a couple of good RA blogs to rest of the family... :D

abby said...

Logial people, gotta love em. If it weren’t for the logical, feet firmly planted on the ground kind of people in my life, I would very likely be an airhead in the clouds floating slightly above the surface of the planet, doing little earthly good! Since I have them in my life, they keep me anchored, and I expand their horizons!

Step back from the computer, Miss Dazy, approaching with your good eye closed, focus only on the red. You will see a delicately curved, lovely heart shape. And, it comes, all the way from the core (heart) of the melon! What's July without watermelon?

Don’t feel bad, Miss Dazey, I just happen to have a doctorate in looking at the world with my one bad eye, ignoring a lot of reality!

Kelly said...

Oh, Abby-

You are so funny. And perceptive.

It is a cut-out heart.
And it is July 3rd.
Just want to make ya'll smile. :D

Thanks for stopping by!

Kelly said...

Miss D,
I only waited a day so I wouldn't give it away to soon...To give someone else a chance!

Rayny said...

Hi, I'm Jonns wife. We spend a lot of time teasing eachother about the various pains and struggles we face each day. Somehow that makes the day go easier even when we hurt. What is that saying about troubles shared? Something about them being halved? Well Jonn listening to me and helping me takes half the troubles for me. I hope I take half the troubles for him.

Kelly said...

Nice to meet you, Rayny!
Being alone is half of the battle!You guys are an inspiration. :D

Jenny L. said...

My own sister has actually laughed at me for saying that the hardest thing to me about the makeup I use is opening the containers...I didn't mention to her that medicine bottles are also difficult. Now, this was BEFORE my actual diagnosis, but the pain has been there and she's seen it...just thinks I'm a wimp. I hate to say this, but she needs a good dose of pain for about a day and a bigger dose of compassion.

Kelly said...

Like the "sympathy pack" discussed above? Wish I could help her understand! Can you get her to read something?

The hardest thing about makeup is holding the mascara wand. Can't do that anymore. Worn makeup only a handful of times the last few years. It is another casualty of RA. :>(

nygiantsfanatic said...

Jenny, I'm right there with you on the med bottles. I love how I get my RA meds from my doctor and I can't even open the bottles. Do they not realize who their patients are?

Kelly said...

Giants Fan & Jenny:
Bottles are made safe so kids won't get into them; MY KIDS OPEN MINE FOR ME!! Hahaha.

Have you ever tried to get Prilosec out of the 2-layered foil blister pack. My dr. put me on it when I went on Mtx and it is impossible! I think the company has no clue folks with RA use their drug...

...almost forgot to mention how hard it is to fill the little needle for the mtx...

nygiantsfanatic said...

Well kids, as much as I would like to make a list of people who I want to spend a day in my shoes, I don't know if I would wish this disease on my worst enemy. And, luckily, even tho I've been feeling really good from the meds I'm on, this is still an every-day battle.

There are so many other things aside from the pain and swelling. Between knowing I can never have anymore children to my diet changes to the monthly blood tests to the possibility that I may not be able to stay on this med long-term to organ damage, etc who would want all this?

So aside from wishing this kind of pain and lifestyle changes on others, how about if we just start saying to these people in out lives:

"I'm sorry that you don't understand the disease I have and what I'm going thru. When you have an opportunity, Google RA. Maybe if you read about it, it will all make more sense to you."

I was very leary about telling my friends and family. There are still some people that I am sorry I told. But I figured that people were gonna notice something was wrong. Most days I couldn't walk easily and my hands were in a state of what I like to call perma-swell.

Surprisingly, a couple people were aware of what RA is. A few others asked for clarification. A couple people acted as if I was on my death bed. But most people had no clue. All they heard me say was the word 'arthritis' and then the assumptions began.

I still have to remind people that I don't have creaky joints, and it's not about getting old, and my body isn't wearing out, and all the other responses I have to come up with as answers to the stupid things that people say.

I have also gotten so much unwanted free "medical advice". Anybody else get that?

What I have found is that the people who are in my life who really want to understand are making the effort. They will take my diet changes into consideration. They ask how the drug study is going, is my bloodwork ok, am I still OK on the stairs at work, bring me gluten-free beer, and follow this blog, my Non-Dairy Queen blog & FB page, and follow RA Warrior's FB page. I have friends who follow Kelly's RA Warrior FB page simply for me.

I have also seen more clearly something I always knew.....people fear what they don't understand. Think about it. Where does discrimination come from? Fear. We discriminate against race, religion, creed, nationality, and disability. I have to wonder how many people actually do understand what RA is and have such a blinded view that they are fearful of the worst. I would never ask my BFF to help me walk or anything like that even tho I know she would in a heartbeat. But is that fear latent in the people in out lives? Are they afraid that we may ask for help?

Maybe someday they will really get it. Maybe they won't. But I can't keep worrying about it. If I'm worth it to them, they'll make an effort to really learn about what I'm going thru.

Kelly said...

Gotten "free medical advice"? Haha. yep.
How about the T-shirt which says "My invisible illness is more real than your imaginary medical expertise"?
Haha. At least we can laugh about it together.:D

Sarah said...

I have had RA for that last 20 years, starting when my daughter (premature) was 9 months old. I had at that time three young children, and looking back, I think a part of their childhood was robbed by my disease ( I didn't have alot of the cool new meds we have now). Thanks for this blog it's great!

Now, I have been laid off, and am struggling to find something that I can do with my physical limitations. Oh Joy LOL

Kelly said...

Thank you for sharing on the blog. Some of us are closer to the start of our journey than you and it is great to have a veteran RA fighter aboard.

"Oh Joy LOL" - sarcasm appreciated. See newest post. :D