Woman’s Day Reply to Rheumatoid Arthritis Comments

Many have been asking about me Woman’s Day magazine’s RA article.

Here’s what happened.

On July 15, I gave my sincere response to a one page article in Woman’s Day on Rheumatoid Arthritis. Many of you responded to the online version of that same article with comments that were intelligent and straightforward. Some of those comments were good enough to be whole blog posts! And there are over 30 of them!

As I mentioned in that post, I also began attempting to directly respond to the magazine’s editors.

Fast forward to August 21. I mentioned the Woman’s Day article in a blog post on the mythical RA. That day, someone left a url for the author of the article in a comment on the blog. After I checked it out, I did email her directly.

Here’s where we stand.

On August 25, I got a reply email from the author of the article, Judi Ketteler. Judi sent me the magazine’s reply. Here it is:

A Note from the Editors:Thank you all for your comments. We know that RA can cause severe pain, suffering and disability and certainly didn’t want to undermine that fact. This online story ran as a one-page article in the magazine under our “Checkup” column. The column (and story) is designed to provide a basic primer and is aimed primarily at people who are not familiar with the condition. It’s factually correct and the author interviewed a top rheumatologist. That being said, there are limitations to what we can cover in such a short amount of space. If we cover RA in the future, we hope to include real-life patient stories and provide more detailed information.

This was this past Tuesday. That was my first indication that someone at Woman’s Day was going to acknowledge us. I took some time to consider how to react.

What does this mean to us?

Someone close to me used to tell me: Some days chicken; some days feathers. If you’re from Texas, you’ll get it. The rest of us try.

I am predisposed to sports analogies and relate almost anything to football. So, I say: You win some, you lose some.

We lost this way.

The editor’s at WD actually think that what they wrote is “factually correct” and a “basic primer” on “the condition.” It is excruciatingly obvious that they think that they are right. Unfortunately, the actual facts about Rheumatoid Arthritis are evident to us every day.

We won this way.

At least we know the score. Where we stand is more apparent than ever. We have a 2-front war on our hands: 1) We fight Rheumatoid Arthritis in our own bodies and lives. 2) And we fight misperceptions about RA, too.

The WD article hit a hot button with RA’ers because it is an illustration of what we deal with every day: friends and neighbors who misjudge us because of RA; family members who refuse to adjust expectations or offer appropriate assistance; a general public which doubts the serious nature of our illness; employers who fail to recognize our limitations; and certain doctors who view us as weak-willed whiners. My son says, “People misjudge by appearances.”

But we are in the fight. We are on the field. The game is not over.

Recommended reading:
My original post: Woman's Day Article on Rheumatoid Arthritis
Taking RA seriously: Can Rheumatoid Arthritis Kill You?
On the lighter side: Weathering Rheumatoid Arthritis

Advice on Rheumatoid Arthritis From the Perspective of a Polio Survivor

Adjusting expectations

Today, I have a treat for you – a visit from an extraordinary friend. She speaks with authority because she speaks from experience. In 1946, her body was attacked with polio from head to toe, even her brain.

She fought her way back and regained use of most of her body. However, several disabilities persisted. Today, she lives with Post-polio syndrome.

But these facts are not her best qualifications to talk to us about living with chronic disability and persistent pain. Let me tell you what I think those are:

Ms. R. is the most sincerely joyful person imaginable, even in the midst of difficulty. She was the first Non-RA’er I ever knew who had an obvious understanding my challenges. Repeatedly, her words have hit the nail on the head even though she had no clue what challenges I faced that day. So, whenever she gives me any advice, I take heed.

Recently, I asked Ms. R., “Can you tell us how to deal with people’s expectations as we become less-abled? How do you explain that you cannot do what you used to do anymore?”

Here is her reply:

The hardest person for me to convince is myself. I go through, as honestly as I can, a question and answer quiz of my "Yes, I can" and "No, I can't" appraisals. I still go through a guilt trip regarding the negative answers.

Fortunately, I have accumulated a number of years' experiences that help me. My physical situation does not stay static, so there is always the challenge and taffy-pull about being a malingerer or a coward.

When I finally come to as honest an appraisal as I can, I step out and either accept the challenge of the expectation, or I say, "I am sorry, but I cannot do that." If the other person is open to any further explanation of my answer, I share my processing. If the other person is not open to needing or wanting any further explanation, I say nothing further.

Whatever the outcome, I leave myself and any others concerned in God's care and loving wisdom. Those of us challenged to move our body, or to think clearly for more than a few minutes without resting, do have to work out rules that we can function by. We become sensitive to the people around us, because we thrive when they express confidence in our judgments of what we can and what we cannot do. Hooray for votes of loving and respectful confidence in us by others!

Then there are the times that people write us off according to their own perceptions. Take courage and lean on the Lord and those friends and family that He gives us. The only good thing about fighting to move or function is that we do learn to lean upon our Father's loving promises and presence.

How Rheumatoid Arthritis Impacts Lives

What kind of an impact does Rheumatoid Arthritis have on a life?

It seems impossible to explain all the impact that Rheumatoid Arthritis has. On a good day like today, I can hardly believe what I have been through myself - although I have lived it. This video bears out my memories. It has been real. And it also proves I am not alone.



Hearing the men always makes me sad. I was especially moved when the first guy said he “always has to depend on someone now.” Ouch.

Of course, the person that I identify with the most is the mum with young children. Let’s paint what she said on a billboard! “There is nothing normal in our lives anymore.”

Many tell me of family members or friends who just cannot get their minds around the ways that Rheumatoid Arthritis changes our lives. Listen to what else the lady said, “I would like them to really think that there are some people in this life that can’t even lift the duvet over themselves when they are really ill. And it’s difficult to understand that lack of strength.”

Indeed. It is difficult to imagine. And yet I remember when I could not pull up the duvet. Sometimes, I cannot take hold of anything, even a thin bed sheet. Like the girl in the video, I remember not being able to eat because of my jaw. More recently, my jaw would open, but I could not hold utensils and had to eat with my hands.

Today, someone told me the story of a lady rheumatologist. She considered herself to be extremely compassionate and gentle, suggesting exercise would help her patients. She saw herself as empathetic and kind. She thought that she understood Rheumatoid Arthritis as well or better than her patients did. And then, one day...

She got RA. And apparently, it was the severe Rheumatoid Arthritis that does not remit with treatment. She was embarrassed at her prior advice. She realized that she had been insensitive to her patients by not realizing the impact of RA on their lives.

She now realized that she had previously been insensitive. She concluded that no one can comprehend Rheumatoid Arthritis unless they have it. Sometimes, it really does seem like contracting RA is the only way.

But we can still try. I certainly tried all day again today. Several remarkable conversations left me hopeful.

Laughter as a Weapon Against Rheumatoid Arthritis

A Fish Story



If you have read many Rheumatoid Arthritis Warrior blog posts, you have already realized that laughter is a critical part of my arsenal to fight RA. Sometimes, some of my friends and I try to out-funny each other. It is a one-upping game. The loser is the one on the floor laughing first. Hey, wait! I think SHE is the winner!

A while back, one of my best laugh-mates sent me her reaction to a blog. It was the blog about how some people think a good hair day means the Rheumatoid Arthritis is cured. I think she was trying to figure out what she would say if she had to deal with peculiar comments like that.

“I have started taking a sandwich size Ziploc bag with ice in it to church for my painful hands. At greeting time I don’t mingle and shake hands, I sit in my seat, and when people come up to me I indicate to them my hands are too painful to shake. After the service I carry out the little baggie of melted ice, and when people ask me what I have, I tell them it’s my pet goldfish. So help me, if one of those difficult people are brave enough to approach me, I will act upset to see no goldfish, tell them where I was sitting, and ask them to find it for me . . . please, before the poor thing dies. . . . .!!!”

Actually, it sounds like she would have fun if one of “those people” ever addressed her!

Maybe we need to give this approach serious consideration. It might help us in our fight to dismantle “the Wall.” Let’s back up just a bit:

Here is a typical sequence. First of all, something about what we say or what we do does not measure up to someone else as being ordinary / normal. However, since our illness is invisible, it does not make sense to others. Then, someone who is ignorant about Rheumatoid Arthritis makes a churlish remark. We feel insulted.

Now is the fork in the road. We choose how to respond.

1) We can refute their ignorance. And then they can choose to either accept or deny our offering of truth and science about RA.

2) We can ignore their comments, privately either brooding or forgiving.

3) OR, sometimes, we can break the tension with laughter. Laughter is proof that even though our bodies are riddled with Rheumatoid Arthritis, we are also normal folks (with feelings).

And sometimes, laughter puts a little crack in that wall, too. Maybe we can talk to the person through the keyhole and teach them about RA after all. Let’s see whether cracking up can trump a wisecrack.

Note: “the Wall” is my term for the barrier which can block productive communication about Rheumatoid Arthritis. Most often, people throw up the wall because of denial. To read more about the Wall, click here.

Also recommended:
So Glad Your Rheumatoid Arthritis Is Cured and Be Your Own Counselor With RA

The Rheumatoid Arthritis Self-definition Fairy

Does Rheumatoid Arthritis define us?

Recently on the blog, Noelle wrote about a warning from her nurse friends to not allow Rheumatoid Arthritis to “define” her. I could not respond to Noelle adequately in the little comment box. Don’t you feel cramped in there?

Here’s Noelle:

"A couple of my nurse friends have told me to not allow the RA to define me. I haven't totally wrapped my head around that concept and how I go about doing that, but this week I think the RA is calling the shots."

Actually, I already had an outline for a post on “defining ourselves” squirreled away in my files. So, change of plans for today. Let’s go ahead and face down one more phantom!

What or who defines us? Does RA hinder or help the matter?

Let’s look at it.

Defining oneself is a primary psychological occupation during youth. I have loved watching my own nineteen year-old to do that. Even her mundane choices are important as she is defining herself. She picks out everything from favorite foods and clothing styles and music to Bible verses to help her identify herself. Yes, her values are reflected by her choices. But she is also marking out a plan for who she wants to be and how she will be identified by others.

When we are young, we explore and choose what we want to use to define ourselves. I have enjoyed watching my daughter do it because it triggered memories in me of making those choices. It is an empowering feeling of youth: that you can define who you will be. It is an enjoyable time. Our goals tend to be ambitious and fearless.

During the next stage of life, the wonderfully productive middle years, mostly we define ourselves by what we do. Our occupations and responsibilities and our influence equal who we are. At least we think so. This is legitimate, too, in some ways.

But there are drawbacks. Eventually, as we near retirement, most of us must re-evaluate those definitions once again. Ever heard of a mid-life crisis? Or empty-nest syndrome? What are we apart from our accomplishments and qualifications?

If things go well, we generate more significant ways to define ourselves when we are older. Life eventually forces us into that. We learn to emphasize more mature aspects of our character and preferences. I think it is similar in some ways to the first stage because there is less focus on performance.

RA-ers are blessed. We get a shortcut to the subsequent stage of self definition. It’s like the self-definition fairy comes one night and makes a trade. You know how the tooth fairy trades baby teeth for a quarter? Well, the RA fairy just takes away many of those things which we do that we think best define us. One day we are running our lives just fine and then… poof! Gone.

What are we when we no longer do the things that defined us? When there are no more masks or props to help us define ourselves? We are whatever it is that we truly value. We are whatever it was that motivated us to do the things that we did when we could do them. We are our character and our spirit.

Actually, Noelle, a woman said that to me too once. It was when I was first diagnosed. And it has haunted me, too – until today. Next time someone tells you not to let Rheumatoid Arthritis define you, tell him about the RA self-definition fairy.

If You Do Not Have Rheumatoid Arthritis, Please Read This

A Memo to Non-RA-ers

My mailbox stays full of “nobody gets it” messages. People feel lonely and frustrated because most people don’t get RA. No, I mean they don’t “get it” as in understand what it is like. Recently, we discussed the UK campaign against ignorance about Rheumatoid Arthritis.

Let’s talk about our own campaign. What are some things we want the Non-RA world to understand? Why? How can we achieve our goal?

What we want you to know

We want you to know what Rheumatoid Arthritis really is. We want to correct the myths and misunderstandings about RA. And, we want you to understand the consequences of a life with Rheumatoid Arthritis.

Think for a moment: Have you ever have tendonitis? Or “tennis elbow”? How about a sprained ankle? Maybe a dislocated finger? Heel spur? Torn rotator cuff? Broken bone? Jammed toe? Or a ganglion cyst? Maybe you have a bit of osteoarthritis in your knees? If you have, then you have a better ability to understand than you knew. Imagine that you had that painful incapacitating condition in every joint.

If you do not read any further, and you re-read the last paragraph, we will have made progress. That was not hyperbole. Rheumatoid Arthritis progresses at different rates, so your loved one may not have involvement in every joint, but you can still get the idea.

Oh, and if I may offer an ever clearer picture, add a bad case of the flu that to the cocktail. You are getting close.

Do you know which joints are involved with your loved one? Are you sure?

We also want you to see why we cannot forget about the RA for very long. Even though you cannot see it, it is eating us alive. Literally. And we are not able to make our hands or our feet do what we tell them anymore. So, if we can put it out of our minds for a few seconds, it comes back in again when we try to move.

Why we want you to know

Why do people with Rheumatoid Arthritis want the comprehension of the non-RA world? Why do we care whether you to get it? Obviously, it would be nice to have sympathy and to feel validated in our suffering.

But that is not our point.

We want you to recognize what Rheumatoid Arthritis is because your reaction to our condition is sometimes not appropriate. Imagine with me again. What would you think if someone handed you a hatchet and asked you to chop some firewood with your broken arm?

No one would do that because everyone understands what a broken arm is. So, that response to your condition would be inappropriate. It would be ignoring the reality of your broken arm or at least extremely minimizing its significance. But broken arms are not invisible.

I have entitled this principle: Recognition Leads to Accommodation. It is the reason that most of us will hold the door for an elderly person or cut meat for a toddler. If any limitation is apparent, most of us will naturally make efforts to accommodate the disability.

Rheumatoid Arthritis brings disability and usually requires accommodation. Not doing so seems cruel.

How can we help you to understand?

We can tell you the truth about Rheumatoid Arthritis, busting the myths as gently as possible. We can refuse to participate in any denial about RA or what it is doing to our lives. We can stop allowing others to dismiss us as malingerers.

From our side of the wall, that is what I see. Now it is your turn, Non-RA World. Tell me how we can help you understand Rheumatoid Arthritis. Please.

Personal thought
Sometimes, I wonder whether people would have responded any differently if my diagnosis had been a more well-known disease like diabetes, heart disease, or cancer. I like to think so. I am guessing that people treat RA the way they do because they do not get it. I am hoping that I am correct.

Note: If you found this post interesting, you might also like to read Transparency and the Wall or Use It or Lose It.

The Me Before Rheumatoid Arthritis

The old me is still in the scrapbook.

Let me introduce you to the me you can never meet: The Me Before Rheumatoid Arthritis

If you have RA, you spend lots of time adjusting to change. For me, the biggest adjustment has been to the disability. First, there is frustration that I cannot do what I still want to do.

But the “old me” is still around – she lives on in my mind. However, she no longer matches the “physical me”. The second frustration is that no one else can know the mental me because the physical me cannot perform the actions which the mental me still wants to do.

A great deal of effort has been spent grieving what I can no longer do, accepting a new norm, and finding new ways to express that old me who did not die. When I meet someone new or fill out a bio, I hate to be asked what I like to do. I CAN’T do what I like to do anymore! So, I act like a grown-up and focus on things more important than whether I can quilt or play tennis.

For this reason, I have been consciously learning more mature ways to define myself. While the Rheumatoid Arthritis will not allow me to express it in the same ways that I once did, I am still… creative, ambitious, independent, generous, and strong. I am still the kind of person who wants to get big things done!

It has only been three and a half years since my Rheumatoid Arthritis became what I always call "full blown,” so I know I am still adjusting. Perhaps that is why I still get ticked off when people see me as lazy or wimpy. I wish I could show them that, before all this happened to me, I could have done what they are doing, too – at least as good as they do it. That is ironic since I spent so much effort moving forward.

If it’s okay, I would like to look back over my shoulder one more time. Just long enough to let me introduce you to the me you cannot see:

The Me in the Scrapbook

Nothing is too hard. If I can’t buy it, I will make it. I sew my own
curtains, slipcovers, and clothes for my little ones. I have refinished dozens
of pieces of furniture. I make Christmas presents. I am fit. I love to run and
swim for hours. I do not ask for help. My dad was a United States Marine;
sit-ups and push ups are recreation!

Once, I bought a home with a 2 foot ditch dug out all the way around
it. I convinced nearby road workers to dump a whole front loader of dirt in my
front yard. I spent weeks with a wheel barrow and a rake grading the entire
property. Then, I landscaped it properly so that it was the envy of the
neighbors. I used to trim my trees, clean my gutters, and plant my vegetables. I
kept my front entrance like a House Beautiful magazine cover.

I bought 22 fifty pound bags of concrete, mixed them with water in my
wheel barrow and put two coats of stucco on the outside of that house, too. Of
course, I painted the whole thing inside and out. I even painted the playhouse
to match. Inside the playhouse, I created sky on the ceiling, and flowery dunes
on the walls.

I make my soup from scratch. I bring meals to the sick. I have hosted
many dinner parties and receptions in my home and in large church halls. I used
to make all of the food and decorations myself. I am tough. I survived
encephalitis without medicine. I can take pain. I had five babies at home with
no medication. I have homeschooled them all. Two of them have a physical
disability. Really, this is the tip of the proverbial iceberg.

Whew! That was a whirlwind tour down memory lane. I hope that did not exhaust you, too.

I have had to say good bye to the old me. As if that were not hard enough, someone told me last week that I just need to be willing to put forth some effort. People only say that because they are judging me by what they see on the outside. They don’t know the other me, the one who still lives on in my mind. I guess I could show them my scrapbook. (NOTE: I will post the photos on the Facebook page, so you can see them enlarged, with notes.)

Friend of Rheumatoid Arthritis Warrior Shares Her Heart

I am so lucky to know a dear lady who sends me letters of encouragement about this blog. She is the widow of a man who lived with RA. I always wish everyone had an opportunity to hear some of her clever and uplifting words, so today I am sharing some of them with you.

I give you my friend Dorothy, one of the funniest senior saints in the world. I hope you can hear her smile.

You know what Rheumatoid Arthritis is because your husband Gil had it, right? I know what it is and every effort you put forth is sometimes like taking money out of the bank. It is NOT like, "If you would just exercise those joints, all this would go away."

How did his RA start?

He was also a florist. It became difficult for him to even cut the stems. That is when we noticed the decline, which got severe in a short time. Most noticeable PAIN was in his hands. That is why I cringe when I think of squeezing your hand that day, but within a few months he began to have difficulty walking. He ultimately had to use a wheel chair. Remember that he was also dealing with the COPD which is probably unrelated, but compounded the RA issue.

How did people react?

ABSOLUTELY MAGNIFICENTLY! They were compassionate, supportive, loving. When Gil could no longer leave the house, they came to see him. He was so active in the church. The RA was an added burden that did really COMPOUND his original problems, causing the additional pains. And, ultimately crippled him.

Do you think you understood?

Even though I saw my husband suffer so much to the end, I am sure there is something missing in MY comprehension of exactly how it is because I personally have not endured the physical suffering. Only the pain of seeing someone you love suffer. And there is the impotence you feel in watching and not being able to help. But, it is still not the same as being the victim, of course.

Thought for the day: Never criticize a person until you have walked a mile in their shoes. That way, when you criticize them, you are a mile away from them… and you have their shoes.

People just don't have a real sense of the depth to which it reaches and the attack it renders on the body.

Do you think anyone else understood?

It is difficult to relate to RA unless you have it. I agree that a person who has not experienced RA cannot have that level of understanding & compassion. Somehow, "I know how you feel" sounds like a platitude. And you want to shout out HOW IN THE H... CAN YOU POSSIBLE KNOW HOW I FEEL? Can YOU move your arms today without screaming? Can you pick up a bag of groceries? Can you carry a pot to the stove? Can you cut a flower stem to make an arrangement for your church? Do you PRAY no one will squeeze your hand when you greet them? Then how can you know how I feel?

Do you read the blog?

Sometimes I think I am a SPY because I do not have RA. But you are such a beautiful crusader for this cause that I feel compassionate and enlightened by each message I read. HEY, I loved your "compassion" message to Mrs. Smart a_ _, uh Toes.

SO often when I read the joyfulness, then also the sadness, in your messages, I realize that in addition to the agony of having to live each day with a crippling disease that was in charge of everything Gil did - that controlled his entire body no matter how optimistic he tried to be. It was frustrating to see that even those close to him, didn't have a clue. Maybe even myself.

What was the hardest part?

He did not want PITY... just understanding. As I think you do also. It is LONELY out there when you are the only one who understands anything. And especially something which controls a MAJOR part of your life. No, he DEFINETELY did not want sympathy, but, yes... understanding. Here was a man who sewed all the drops and costumes for VBS, made CHOIR ROBES, did all the flowers for the altar. He bought them wholesale – RAW - and he cut them, arranged them, and carried them to church.

Later, we had to get them for him... he would try to tell us where to cut because his hands could not manage to cut through the hard stems. And later, we even had him tell us where he wanted them to be placed in the arrangement. He would not give it up. When he was wheelchair bound, he would have us take him to the church hall so he could instruct the others to make the VBS stuff.

So, if he had a GOOD DAY, a well meaning friend would say something stupid, like, "Well, I bet you are glad THAT crud is over" or like "Glad you are your old self again." They did not have a clue.

Maybe when YOU hear stupid stuff like the lady at the beach, it is NOT that you want them to feel SORRY for you. You just want them to UNDERSTAND. You want them to be EDUCATED about RA.

You, Mrs., have 5 kids at home! You are NOT a "gimmee stuff princess.” You do NOT want sympathy - just understanding as Gil did.

He just wanted it to be OK if he was not the same as before and if he had to back off some things. Rather than, "I guess you are tired of doing the flowers... or the VBS... or anything." Like he was glad to get rid of it. He HATED to give up ANYTHING.

What did you wish people knew?

Adding to that, I believe, is the frustration of the cavalier attitude and responses of those with NO CLUE where RA has taken a person. The road it has forced you to travel and I believe THAT is the - well, maybe even hurtful part. You shaved so "you must be all BETTER" as if a miraculous cure had taken place. Like when we get over a COLD, and feel great now. They never knew how laborious it was for him to shave, as it may be for you to wash and fix your hair, then hear, "OH, you did your hair. I am so glad you are all better."

You have been a big help to me by sharing so much about Gil.

Thank you, Kelly! Thank you for being transparent in this. I am transparent about my Life, my faith… everything except my health. I am always "FINE" … "GREAT,” etc. You make me realize that sometimes it is OK to say, when you responding to a friend, to someone who really cares, "I feel terrible", "I hurt", "I am having trouble breathing today."

Thank you, Dorothy, and I do feel like you understand.

That's why my prayer for you is constant: That God fills you with His peace and His strength so that each time you go through a tunnel, you can SEE His beacon lighting the way for you, leading you back to the mountain top. I somewhat love you, you know.

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.

The UK's "Campaign Against Ignorance" of Rheumatoid Arthritis

Studies show that people do not understand very much about Rheumatoid Arthritis. There are many misconceptions. But, you probably already figured that out on your own.

In the UK, the National Rheumatoid Arthritis Society is trying to change that. They have an entire campaign about it. They call 2009 the “Year of Rheumatoid Arthritis.”

The director of the NRAS said that they were shocked at the “alarming ignorance” about RA. People do not realize what the symptoms are or who gets Rheumatoid Arthritis. They confuse it with Osteoarthritis a.k.a. “regular arthritis” or OA.

There is also confusion about the seriousness of the risks involved in RA, such as heart disease. It is not seen as a systemic disease. People do not recognize how it brings suffering and disability.

When I first heard about this “Year of RA,” I told friends it was the “coolest thing since ice cream.” I even sent a link out in an email. It was proof of what I knew by experience – and it’s always good to be validated.

I told one rheumatologist about the UK campaign and he called it unnecessary. He said, “I don’t think people are confused about RA. They know enough.” At the time, I was too shocked to reply.

But now I realize that it was a clue to our predicament. That same guy did not approve of using the internet to research RA. (I had given him a printout of the UK NRAS campaign article.) I guess he felt like knowledge is dangerous.

He is not worried about whether people understand Rheumatoid Arthritis. He does not encourage patients to learn more about RA. He does not approve of passing around printouts from the internet. He has never read an RA blog. He is ignorant of the ignorance.

But ignorance is not harmless. Ignorance of Rheumatoid Arthritis is especially dangerous. People who are already affected may not be able to receive the support that they need. Others may not receive an early diagnosis due to ignorance of the disease.

The UK campaign also seeks to encourage early treatment of Rheumatoid Arthritis. That is the only key we know which may help curb damage. People do not seek treatment if they do not know what RA symptoms are or that it is a serious life threatening disease.

So here is our situation: most people do not know what RA is. But, we know a lot about it. We need to speak up. We need to declare war on ignorance just like they are in Britain. We cannot wait for the medical professionals to do it for us. Some of them may be satisfied with the status quo.

NRAS study RA poll and Year of RA

It's Ok to Laugh if You Have Rheumatoid Arthritis

Life with RA can still be funny.

Funny things happen every day. I can laugh at almost anything. It just takes a certain perspective.

Sometimes my son doesn’t appreciate my joking so much about the RA. If I make a funny comment about how bad it is, he might look at me pleadingly and say, “Mommmma, that’s not funny!”

“Yes it is,” I told him recently. “It depends on your point of view.” I always talk to my sons in terms of sports analogies, so I talked about how hard it is to tell whether or not someone stepped out of bounds when you are sitting at the other end of the field. Point of view is everything.

My son loves me so much. He was young when I “got sick” with Rheumatoid Arthritis. He wrote me a note about how mad he was at this “evil disease.” I will always cherish that.

He went with me to my very first rheumatologist appointment. But he stayed in the waiting room. He did not see how rudely I was treated. The man typed on a laptop without looking up at me. He never looked at me. He talked while looking down at his keys. Eventually, he and his laptop escorted me to the door.

Of course, we reported the episode to the family in the car on the way home (two of my kids had been in the room with me). Years later, we were laughing about the incident with a friend who also has arthritis (both RA and OA). She had had the exact same negative experience with Dr. Laptop! Neither of us had kept him as a doctor.

My son heard us recall the story and offered to me his reaction: “You know the world could be a lot nicer if doctors would treat people right.” I think my son was calling a penalty on Dr. L. From his view anyway, the man was out of bounds.

And then, my son laughed out loud, “You know what, Momma? I think maybe the guy was playing video games on his laptop the whole time. He just never looked up because he didn’t want to stop. And he did not want you to see what he was really doing.”

We laughed. That’s very amusing, son. See? You can find the funny side to anything. You just have to look for it.

So Glad Your Rheumatoid Arthritis Is Cured

“I am so glad to see that you are better now.”

I get these comments frequently and I am trying to understand them. Often, it occurs after I have washed my hair. Someone will come up and say, “I am glad to see that you are finally better.”

It is awkward. And so are my reactions.

Should I answer, “Why, yes, isn’t it a miracle”? No, sarcasm is not the right approach.

Should I ask, “Is that your way of saying I look nice today”? No, too rude.

Should I say, “No, I do not feel any better; I just managed to finally wash my hair”? Probably I should, but I don’t.

What I do is try to hide my stunned look. I feel embarrassed for both of us. I wrestle for an appropriate response.

Can I tell you what it feels like I hear being said to me? It sounds something like this: Thank you for not acting sick today… I knew you did not have an incurable disease… You can be alright if you want to be....

If I had actually gotten well in some way, they would be words of comfort and encouragement. But, I have very obviously not gotten better. The comments are said as I struggle to stand or walk. It feels like someone is belittling my suffering.

---

Here are the cold facts: It is so hard to style my hair now that I only do it a few times a month. Hand, wrist, and shoulder dysfunction make mascara and nail polish a rarity too. My appearance has been one of the casualties of Rheumatoid Arthritis. That’s pretty typical from what I’ve observed.

I am doing my best to survive. I am still a woman and my appearance does matter to me. But living matters more.

I got a phone call last weekend while I was working on my son’s birthday cake. It took me almost all weekend to make the special cake, since my hands kept wearing out. The lady who called is a sweet lady. However, after a few moments she said, “Well, I am glad that you are better now.”

Dead silence. Huh?

It wasn’t my hair. She couldn’t see me, but I had not even brushed my hair that day. I had to save all my strength for the cake. What did she mean? I can only guess. Either she is believing something that she wants to be true or is she sending me a gentle message to stop acting sick. I am still not sure.

I can only say that people have a lot of strange reactions to this misunderstood disease and this is one of the weirdest. Has anything like this ever happened to you?

The Difference Between Osteoarthtitis and Rheumatoid Arthritis

What is the difference between Osteoarthritis and Rheumatoid Arthritis?

Sometimes, you can show how much you care by disclosing what you know. But, other times, you can show how much you care by acknowledging what you don’t know.

A good friend asked me this week to explain the difference between RA and OA. I was really impressed with her. It took courage to admit she that did not know. Do you know how many people have asked me that? She is the first one.
How many people do I hear ask, “What is Rheumatoid Arthritis anyway?” Very, very few. They usually don’t already know. So, I wonder why not.

Anyway, that is the hand we’re dealt. So here is my short answer:

Think of Osteoarthritis like rust. If you have a favorite tool and you use it a lot, it can start to get rusty and worn. That’s OA. You can sometimes clean it up with chemicals or a salt scrub. That’s like getting arthroscopic surgery done to clean up a knee.

Who does OA strike? Anyone who has used a joint excessively: mainly that means old people and athletes.

RA is more complicated. It would be a bit more like leaving a brand new tool in a bucket of battery acid overnight. It is suddenly ruined. You better buy a new one.

That is the sudden destruction and disability of Rheumatoid Arthritis. Joints and their supporting tissues are suddenly destroyed and left disabled. Little holes in the bone called erosions tell the story of some erosive substance which has eaten away the flesh.

The joints cannot be cleaned out on an outpatient visit. Frequently, joints must just be replaced.

Where does RA strike? Joints, organs, nerves, muscles, tendons, and bones in children, women, and men of all ages, but most frequently between 30 and 50.

Thank you to my friend for asking that very basic question. I am grateful that she gave me permission to share, so I tried to give a simple answer. With a short answer, perhaps more folks will be able to understand.

For a more complete answer, stay tuned to Rheumatoid Arthritis Warrior. I know that my friend will because she cares. I know she cares because she told me what she did not know.

The Invisible World of Rheumatoid Arthritis Speaks

Bonus: What is gray and lights up? An electric elephant.

Aren’t you amazed at the explosion of online activity related to Rheumatoid Arthritis? Of course the spammers have caught on, too. But in just the last few months, the number of genuine RA blogs has mushroomed. Every search I run turns up something new.

But it’s not just numbers. There has been a change on another level, too. You can hear fresh energy in addition to hearing new voices.

Our movement is not unified by any organization. There is not one single message, but many distinct topics and styles. So what is it that gives Rheumatoid Arthritis patients a sense of cohesiveness?

I believe that there is a noble goal, a thread which ties us all together. It is this passionate cry: We will be heard.

We have all decided that we must be heard.

This interest is no fad or hobby like so many blogs. For us, this is about our lives. We do not write or network as a mere diversion. We are putting our hoarse voices together so that we can be heard. Period.

I want to be the first to forcefully state that no matter how many there are with this message, there are not too many. Every day that this field is expanding, we are closer to an understanding of this complicated disease and then a cure. Every clear and honest voice is a contribution to that goal.

Rheumatoid Arthritis has been called an invisible illness. Our world is different from the non-RA world. And sometimes they are not even sure RA is real. What do they understand about our reality?

It is as if we are in a world like the one which Horton saved on the pink clover. I want to be like Horton, my favorite elephant. I want to encourage every voice to speak up until we are heard and the world of Rheumatoid Arthritis is truly recognized as Whoville was in the end. Each of our voices is needed.

Like the Mayor said in the story: “We’ve GOT to make noises in greater amounts! So, open your mouth, lad! For every voice counts!”

The Use It or Lose It Approach to Rheumatoid Arthritis

Does Use It or Lose It Work for RA?

Gee, I hope you won’t mind another beach story. Here is a different view of the same beach.

Right about the time I was finally diagnosed with Rheumatoid Arthritis, I got a call from a friend who was coming to the coast for a vacation. “Bring the kids and come out to the beach and see us,” she said. I really love to visit friends. Of course, I love the beach. And, like most people, I hate to say, “No.”

So, I set out to manage the beach. At this point, the RA had only disabled my shoulders and my feet. It was pretty early in the process. However, the disability was extreme. I no longer washed my own hair, much less styled it. Walking was difficult. My kids helped me do everything that I did do - and did the rest for me entirely.

Like I said, this was early in the RA process. So I did not think about how my friends would react to the Rheumatoid Arthritis. I assumed that they would accept me as they always had, and perhaps even sympathize with my plight.

These friends had always been particularly kind to me. We had laughed and cried and prayed together. They had noticed more than once when I needed something– and given it cheerfully without having been asked. So I was shocked at the reaction to what RA had done to me.

At first, there were merely disapproving looks because I let the kids carry all the stuff onto the beach. There were lots of stairs around the condo and I was having a hard time getting around. I had learned to lean on the shoulder of my son to help me walk. I did not say anything, but I was always several paces behind my friend. She’s the “Why walk when you can run?” type – like I had always been. (See Makeovers and Bag Ladies.)

I just couldn’t keep up with her and she seemed a bit annoyed about it. But, I hoped I was wrong in my perception. Maybe she was stressing over something else.

When we were finally seated on the beach chairs, I waited for a good opportunity to tell her about the RA. It was awkward, but it never occurred to me to give up. She was a friend, after all.

However, neither sympathy nor empathy was forthcoming. There were a few comments about how her pains were worse than mine. I would rather be friendly than pushy, so I gave up pretty easily.

She carried my beach chair on the way back up to the car. I will never forget what she said to me, “You know, Kelly, what I have always believed? You either use it or lose it. Do you know what I mean?”

If only I could find a way to live in her reality – where Rheumatoid Arthritis is not real. How can I get into THAT reality? I only gulped. I did not reply. But now that I have had a few years to think about it, I know what I should have said:

“You know what I have always believed? Compassion – I always say – you either use it or lose it. Do you know what I mean?”

Emapathy for Rheumatoid Arthritis

Zero to 60 in 15 Seconds Flat

How can you describe how your Rheumatoid Arthritis makes you feel in 15 seconds flat? We lament the fact that there is a wide world out there that just “doesn’t get it.” My own world is the same as yours. My own family and friends and doctors have a hard time.

There is no Stepford Wives extreme makeover for understanding RA. The folks who don’t have Rheumatoid Arthritis do not understand what it is like to walk – that is limp – in our shoes. And they never will entirely.

As I discussed last week in Transparency and the Wall, there must be a balance between our willingness to be honest about our health and our accepting the fact that some people will choose to live in denial. We are neither able nor responsible to climb the rock wall of denial that some folks throw up in our faces. Besides, repelling is not an approved sport for RA-ers.

So, let’s assume you have a willing audience to hear your description. What can you say fast – before you lose ‘em?

There are three categories to describe your physical condition: Strength, Stamina, and Pain.

Strength

I like to describe strength as what it takes to lift a backpack. Someone with Rheumatoid Arthritis must carry an extra backpack which cannot be put down.

Try to describe what is in your backpack right now. Is it full of concrete blocks or just a load of laundry? Remember, even if it is only a magazine, that could get pretty heavy if you could never put it down.

Stamina

When you have RA, it seems like the world is no longer a level playing field. It’s like all of life is climbing a mountain. You have to struggle and climb your way to accomplish any small thing. Some days can be grueling like the Alps and others may be only challenging like the Appalachian Trail. And, every morning, we begin again at the bottom of the mountain.

Try to say how steep you feel the mountain is. And where are you on it, right now?

Pain

Pain is the defining symptom of RA. If your audience has never experienced severe pain, this will not be easy. However, if he has ever had any severe pain, ask him to recall that pain and label it as “five”. (Some examples may include kidney stones, slipped disc, torn rotator cuff, being shot with a bullet, or natural childbirth).

Then, rate your own pain right now with a number between zero and five. It would be good at this point to also name the places that hurt the worst.

You may end up using all three word pictures. Or, maybe you only need one. I’ll bet, after this gets you going, you come up with even more on of your own.

Here is my example from today:

Aw. Thank you for asking. Today, my backpack has several library books in it. I’m climbing a small grassy knoll today because I decided to take the easy road. Have made it over halfway up the hill. However, going to Wal-Mart was more like plowing through an avalanche. I am hurting in about 15 joints and I rate it a 3.5.

It was so kind of you to inquire. ; -D

Two Kinds of Site Reactions about RA

It’s been a week of site reactions. There were lots of positive reactions to the new blog site. After a few days, I realized that I was receiving two distinct flavors of responses.There have been those who were en- couraging: "Nice article”; Good writing”; and “Well done!” I am so grateful.

Then there were the reactions that came from those suffering with RA or another chronic illness. In some way, I think they heard my voice differently - like we are speaking the same language. They said things like: “This is so hopeful!” and “Wow, can we pray for each other?” and “Thank you, Kelly. It’s ok to say I hurt.”

Everyone was positive (Yeah!!) and everyone was sincere (I think!)

What I detected may be a symptom of the detachment which exists between the world of Rheumatoid Arthritis and the non-RA world. I have read hundreds of pages of RA blogs and forums and message boards over the last three years and at least as many times as I read, “It hurts,” I also read “No one gets it!”

I want to build a bridge. This blog is my first baby step. Please join me in working to disassemble the partition. That brings me to my second “site reaction” that I observed this week.

Normally, I would never share this with anyone (except RA-ers). But, here goes. I have been really suffering with an injection site reaction (ISR) to the Enbrel. It’s like a huge 4” bee sting on my leg. It’s hot and hard and itchy - it hurts. When I lie down, it feels like there’s a rock under me. This is the third ISR in a row, and each one is worse, and appears sooner after the injection.

It is amazing how much this ISR is like a bee sting. I wanted to post a picture of my leg, but it’s pretty bad. So, I decided to look for a pretty picture of a bee…

Maybe he can also inspire us to be like carriers of understanding the way he goes about spreading around the pollen. We can touch others lives like the bee, letting something also rub off on us like the bee. I am thankful for the way that others rub off on me and I hope that I can write things that will be penetrating – hopefully without all the itching, though.

Dr. Dolittle and Rheumatoid Arthritis

Who is Dr. Dolittle?

I saw this great article on Facebook about how much people with a chronic illness need doctors who will listen. Mainly people with RA read that page, I think. How could we get doctors to read it, I wonder?

Something funny occurred to me when I read it. I hope you get a smile out of it, too.

My kids were watching the old musical Dr. Dolittle. It’s the one with Rex Harrison and the cute pushme-pullyou animal which looks so much like one – no, two - of my mom’s alpacas. I know it’s old, but still delightful.

So Dr. Dolittle decides to become an animal doctor because he can’t get along with people, who he finds hypocritical and pretentious. He sings, “Why can’t people behave more like animals?” Of course, he means humble and honest and kind.

Well, later on, I was reading the article (When You Talk – Does Your Dr. Listen? Link below.) and this strange thing happened: Somehow the movie and the article merged into one. I had to laugh out loud. The song changed into, “Why can’t doctors behave more like people?” Of course I meant more humble and patient and kind.

I guess it was so funny because I still had the British accent and the music in my head. I could just hear Gubgub the pig squeal to get away from some rude and insensitive doctor the way he did in the movie when Dr. Dolittle said he’d consider eating ham again someday.

I know there are some very good doctors just as there are some good politicians and IRS agents. I don’t mean to offend any good doctors. Just the ones who might call themselves “Dr. Do Very Little.” So sorry. But, we are in pain, so we need to laugh every chance we get. Hope that’s ok.

The article really is great, seriously. The comment section is also quite useful. I would definitely consider printing a copy of it to share with friends – and your doctor.
Facebook article link

Transparency and the Wall

Communicating about Rheumatoid Arthritis

This post is an answer to my dear friend from Oz:
She writes about wondering why, as a woman with Rheumatoid Arthritis, I am usually so private about my health issues. She also praises me for "coming out" to write this blog. She wonders whether I had to overcome "false pride" as she did.

Wow. I never thought I was "coming out," so I thought about your letter all day. I did not ever try to keep my RA in the closet. (It is much to large to fit in there.) So, I am glad for the opportunity to explain how I got to be where I am.

No, dear friend, the reason I answer, "Fine" when asked about my health is not pride. I do not try to hide the RA. There are more complicated reasons for the lack of openness with certain people. I have always been willing to be honest about the RA, so blogging was not a giant leap for me. I love to share and network with others who are searching or hurting.

Now is the time when I will actually do what you thought I did already: be transparent when it is uncomfortable.

When I first got sick, I used to try to explain why I could not do things anymore. But people did not understand because they do not know about RA. People who knew me before I was sick did remember how I had been so agile and strong. However, nobody here knew me - since I moved here right before I got sick.

Sometimes, I was hurt as much from reactions to RA as from the RA itself. Reactions I have received include cold silence, changing the subject, comparing RA to a hangnail, and laughing out loud, "Yeah, right, like you are old enough for arthritis!" I was encouraged to get over it.

I could write a book - No two books: one book about the way I have been treated and a second one about all of the other RA folks who have told me the exact same stories. That's right! We actually swap stories because we trust each other.

Anyway, I won't ever write those books. Instead, I will put my energy into making a difference. My humble goals:

1) Education of the whole world about what RA really is.
2) Helping a few RA patients to get more out of their lives.
3) Be one tiny (but bright and shiny) dot in the "connect the dots" puzzle of curing RA.

So there you have it, my small friend in the sparkling red shoes!
It isn't pretty. It isn't pride. It's plain old self preservation that made me do it.

I promise I'll do my best to follow my own advice: share with those that will listen, but not feel responsible for others' denial. Sometimes, that denial is a wall that is too high to scale. Didn't I tell you that I have a disability, after all?