This is the second part of a story about a spouse with Rheumatoid Arthritis. In Living with a Spouse with Chronic Illness, part 1, Michael described the surprising process of learning to recognize the amount of chronic pain that Rheumatoid Arthritis brought his wife Deborah. He explained that it was difficult to accept that his spouse suffered from Rheumatoid Arthritis because she did not look sick.

In part two, Michael gives helpful words to spouses of Rheumatoid Arthritis patients taken from his own experience with Deb. These are things that he wished he understood sooner. I hope we will be able to share this story with many other spouses of patients or other family members. There is an email this post button at the bottom of the page.

Advice from experience about a spouse with chronic illness

Our lives changed dramatically from being spontaneous to continually making trade-offs like, if we do this then we can’t do that. If we could go for a walk, she wouldn’t have energy to go to dinner or a movie.

Just the simple act of myself or others greeting Deborah as we often do with a, “Hey Deb, how are you?” could open a Pandora’s Box of reactions. I could barely comprehend it. Eventually she boiled her response down to a simple, “I’m fine.” But those of us who really knew her understood. “Fine” meant she’s dealing with unbearable pain, but she’s still at church, with the kids, running errands, outdoors at a park, and it’s tough.

Because she looked “fine” on the outside friends would try to be spontaneous and invite us to dinner, gatherings, parties or visits. They would ask if she could take care of their kids for an afternoon, or perform other acts of service when, for Deborah, just getting through the day was enough of a challenge. We adjusted much of our marital life as well with me taking on much more of the daily household responsibilities and limiting our intimacy as a couple. RA was the disease that changed the entire dynamic of our family and we slowly learned how to work and accommodate.

This is a key point for those affected by RA directly or as a loved one. Your lives will change. Though you may not see the ailment, its effects are as real and as life-changing as someone having another severe illness, loss of limb, a permanent handicap or some other daily medical challenge.

The pain is chronic and there is no cure. Some days are better than others as the pain arrives in waves and often, on the low-pain days, Deborah would be almost back to her old self again. But flare-ups would regularly happen and drag her back down again, sometimes for weeks.

A word about flare-ups too – for those of us who love the sufferer – when they are doing “better” we may think they have finally been cured and the RA is gone. This will play with your mental stability, because the flare-up can pull them down to even worse than they were before. On some occasions Deborah’s flare-ups were so severe that she would be bed-ridden for days.

As challenging as RA can be, you will still find days full of joy, laughter, fun and love. Yes, the pain is constant, but you and your loved ones can work together to manage it. Talking regularly about your pain levels openly, to validate what is happening and without desperation will help the rest of us come to an understanding of how you are suffering.

Remember that to the rest of us you “look” wonderfully healthy, even glowing at times. We need reminders, yes – even long-time husbands like me – that you’re in pain. We want to connect with you, help you to not feel alone in this battle and show our love through understanding things that are unknown except to the sufferer.

Deb tried every possible remedy – dietary changes, environmental therapy, exercise, acupuncture, massage, water therapy, naturopathic treatments, hypnosis, Enbrel and all sorts of other medications – all of them to little avail. She succumbed to many of the side effects that are “only suffered by a small percentage of the population.” Eventually the endless doctors and visits and tests became so burdensome and she simply gave up all attempts for relief.

Then end of Deb’s chronic illness story

Deborah passed away from breast cancer in 2008. She and I believed that her RA pain masked what she might have noticed otherwise. A 5 cm tumor is considered very large and dangerous. Deb’s tumor was 10 cm by the time she was diagnosed.

Thank you to Michael for the courage to tell Deb’s story here. He told me that the ways RA affected their life became clearer afterward. He wished he understood better in the beginning. I have no doubt that Michael’s telling of Deb’s story will help other spouses of Rheumatoid Arthritis patients to grasp more of our experience of living with RA . Link to Michael’s blog.

Recommended reading:

• Do You Love a Rheumatoid Arthritis Patient?
• Lots more posts for those who do not have Rheumatoid Arthritis.
• Rheumatoid Arthritis Pain
• Sympathy and Living with Rheumatoid Arthritis Symptoms
• Do Rheumatoid Arthritis Patients Have a Low Pain Threshold?

Advice column takes on unsolicited medical advice

This article appeared in a nationally syndicated column the other day. There were squeals of laughter in my house when it was discovered by one of my kids. It’s so absurd it’s funny.

Let me get this straight.  A woman wrote to a national columnist complaining that her friend does not follow her medical advice. Did she expect the columnist to shake her finger at the sick friend? “Shame on her. Why does she insist on seeing that doctor when you took ten whole minutes looking up that “alternative cure” for her online?” No such luck.

 Is giving unsolicited medical advice the loving thing to do?

The columnist gets to the heart of the matter with her last sentence. The caring thing to do is to listen and understand a friend’s illness. Wouldn’t that demonstrate more concern than sharing what you “like to find” for a friend? Wouldn’t that help more?

Rheumatoid Arthritis patients often tell similar stories. Sometimes they ask me, “Do they think I’m stupid?” “Hopefully not,” I tell them. They just don’t understand what Rheumatoid Arthritis is. Do diabetes or cancer patients go through this too? I hope not.

Postblog: Once saw a t-shirt which read: My painful invisible disease is more real than your imaginary medical expertise. I only talked about that to one person because she did not find it funny. I guess it doesn’t take much to amuse us when we so much want to laugh.

Recommended reading:

• Thinking about Rheumatoid Arthritis Hands
• Dear Bridget Duffy from a Rheumatoid Arthritis Patient
• Some Answers for Rheumatoid Arthritis Just Bring More Questions

Quiet & Rheumatoid Arthritis

Pain usually does not bring me to tears. I just get more quiet. More pain; more quiet.

When I was getting ready to have my first child, I prepared myself saying, “I can do anything for a day.” Of course, I was pretty frustrated when labor pain actually lasted three days. But I learned a life skill that I use every day, how to have a high pain threshold.

Lately, those days keep coming to mind. Could it be that my baby turned twenty last week? Or could it be the familiar quiet?

This is hard. I never write about this pain. Formerly, I would have been alarmed at the pain this severe in any one part of me. Here I sit with pain in most of the joints in my body that is as harsh as labor at times.

I can barely walk. I can hardly do anything at all right now. It’s getting very quiet.

Rheumatoid Arthritis pain is just plain ugly

This is difficult. I feel the same as so many who have written to me: no one understands. Friends and family don’t have any idea what Rheumatoid Arthritis pain and disability are like. And they don’t usually read my blog.

RA pain did bring me to tears today. I told my teens that it’s like being in a dark room. I need a window.

Writing about RA pain is hard, too. If we tell it like it is, we are whining. If we hold back, we’re glossing over it.

Rheumatoid Arthritis pain is ugly and there’s no pleasing way to discuss something so ugly. Recently, someone told me it’s so much worse than I present it; someone else said I present it so much worse than they experience it. Sometimes, I think if I described how ugly I think my own RA pain is, no one would read it.

Postblog: Most of us agree that the media presents an RA Lite. This story about a warrior named Craig Cain is an exception. Have a look at this straightforward presentation about a brave young man who’s been fighting Rheumatoid Arthritis pain and disability since he was five. Bravo to the Memphis Commercial Appeal for a candid view of Rheumatoid Arthritis pain.

Recommended reading:

• A Message from a Young Rheumatoid Arthritis Warrior
• “25 Years in Arthritis” – an Article on Rheumatoid Arthritis by ABC News
• Mistaken beliefs about a Rheumatoid Arthritis blog?
• RA, Blogging, and Mary Poppins

Tired of the stages of Rheumatoid Arthritis grieving

Yeah, I’m probably not supposed to say these things. Whatever…

Some of these RA changes are wearing thin. I never wanted to be branded by anything negative. I’m getting tired of feeling like I’ve lost credibility because of the chronic illness label. Does anyone else feel like this?

Tired. I’m tired of hurting all the time. Also, I’m tired of having to pretend I’m absolutely fine and physically able around folks who can’t handle the truth. It’s physically so difficult to do that – I have to avoid people most of the time. Tired of losing that social interaction, but it’s too difficult.

You know what else? I’m tired of not being believed. A pharmacist just told me, “At least you are not really sick. We have really sick people.” But, we need these expensive medicines to treat the disease. Employers don’t like to pay the health insurance premiums for an RA patient either. Did you ever have to defend how expensive you are?

I’m tired of so many things. I’m tired of the way it’s assumed this RA pain only bothers me when I mention it. If I’ve explained what it’s like, then why can’t I be believed? Stop telling me you know I’ll feel better tomorrow – it’s been four years of RA pain that only gets worse.

Remember the RA Help button last month? This time, I’m looking for the Eject button. Do you get the feeling there is no way out? Like Alice in Wonderland: Where’s the right door? What’s the right mushroom?  

Stages of Rheumatoid Arthritis grief: enough already

Sometimes, we just feel like we can’t take it anymore. The other day, someone left a comment about wanting to go in the closet to lie down and die from too much pain and too little understanding. And no way out. There are many others – I could go on.

Maybe you’ve read this post on RA depression. There is some discussion of the normal stages of grief and how they relate to RA. Would you believe I just read an article about the anti-depressant Prozac (Celexa) being used to fight Rheumatoid Arthritis in an experiment on mice? Wouldn’t that be convenient?  

My rheumatologist asked me if the medication “failures” depress me. I explained that I’m fine because I have had contact with others who live with RA and that has helped me. I know I am fine – I am just tired of being fine with RA. I’d rather be fine without RA.

Recommended reading:

• Where Is the RA Help Button?
• The Rheumatoid Arthritis Warrior’s RA
• Be Your Own Counselor with Rheumatoid Arthritis
• Rheumatoid Arthritis and Depression

Last year when I wrote my first memo to Non-RA’ers, I tried to explain in simple words what it is like to be a Rheumatoid Arthritis Patient (RA’er). I thought that if I explained Rheumatoid Arthritis in terms of injuries and illnesses that are familiar, it would be easier for you to understand what it’s like for the RA patient you love.

Really, I was trying to help you understand what your RA patient needs you to know.  It might make a difference in your expectations if you can imagine for just a moment what an RA patient experiences. The kind of pain and weakness that hinders your performance once in a while due to a sprained knee or kidney infection limits RA patients every day.

Can you relate to this? When you’ve just had shoulder surgery, you don’t expect to be asked to shovel the driveway. If you had a broken leg, you would want people to know not to expect you to join in a bike ride. Most Rheumatoid Arthritis patients live with these kinds of problems in several joints every day. For some, it’s every joint.

There’s not some fuzzy math here either. Don’t believe that the pain is divided evenly since RA patients hurt in more than one place at a time, with each joint hurting just a little. Each single joint or tendon hurts as much as the one joint in the injury example. RA uses multiplication, not division. Actually, RA patients often state that when they have had injuries or surgeries, the pain and disability is much less than that of Rheumatoid Arthritis.

Please learn more about the Rheumatoid Arthritis patient in your life

There are so many other things I wish I could tell you. I’ll close with a request. Please learn before you judge. Every day I read comments from RA’ers who cannot get people in their lives to believe how difficult and painful living with RA is. They are not accommodated.

Is it that they are not articulate enough to explain it? I don’t think that’s it. Maybe people just doubt what they cannot see or feel for themselves? Here is a way you can see much clearer. Spend some time reading comments on this blog or scrolling down its Facebook page. A little while doing this would change the life of the RA’er you and I both care about.

If you want to learn a lot more about RA, start with RA 101 on the top menu tab. Also, this link will take you to every post on this blog which is specially written to explain RA to you who do not have RA. Click on individual titles to see comments or post one.

Note: I grant permission for the reprint of this post if it remains entirely intact and my copyright statement remains attached.

Recommended reading to help you learn more about RA:

• Rheumatoid Arthritis Disability Makes Things Difficult
• 13 Ways to Help People Living with Rheumatoid Arthritis
• 20 Things Not to Say to a Rheumatoid Arthritis Patient

One problem is that I try to be nice. But RA is not nice. So how can someone get a clear picture?

I didn’t want to be called a drama queen, so I’ve held back. It’s not that I care what people think – I just want them to listen to the message. Sometimes, you can overwhelm RA unbelievers with too much information and they tune you out.

The Disconnect about living with Rheumatoid Arthritis

The last few months, I’ve been trying to figure out why there is such a “disconnect” with RA. People who live with RA frequently say, “No one understands.” In one of my first RA blogs, I mentioned “the wall” between RA and the non-RA world. At that time, I believed that the wall was mostly due to ignorance. However, the more I learned, the more confused I got.

When I read books or articles about RA or watch commercials about treating RA, I see a different disease than the one I live with or see in others I know. So, I started to wonder what the doctors see. Do they see the RA that we live with? What do they hear when we describe it? Or do they hear Charlie Brown’s parents: “Brwa bwah rwa. Pwah bwah arw”?

Twice in four years has a doctor ever allowed me to describe some of my Rheumatoid Arthritis symptoms. But I still did not feel heard. And no one else has ever asked me what it is like.

Unsolicited, here is what it’s like to live with RA, as briefly as I can say

All of my joints are tender to the touch. At any one time, several joints hurt with sharp pain that is similar to an injury. If I’m alone, I cry out in pain. If I’m not, I just breathe in and pray.

My joints are too weak to do most things. I stumble and drop things. If I use a joint to do anything, then it quickly becomes tired and useless and painful.  Everything I lift is too heavy. Everything I do is a struggle. I try to look as normal as possible.

As I breathe, my sternum joints hurt. My stiff jaw makes eating certain things awkward. I eat meat with my fingers instead of using a knife. The sound inside my neck of crackling at the base of my skull never stops. It scares me.

When I go to a store, I cannot keep up with my kids. They look on in horror as I am shoved out of the way while I struggle to navigate. Senior citizens often run the shopping cart into me out of impatience, complaining that I did not get out of their way.

I have a low-grade fever a few days per week. Most days, I feel like I have the flu. I fight nausea as I struggle to inject chemotherapy (methotrexate) every week.  I have said, “I’m sorry I can’t do that. I have a disability.” And had someone laugh out loud to my face in public.  More than once. I never know when I will lose my voice or for how long.

Even though I never tell anyone what I just told you, most people I know judge me. They let me know that they think I’m a hypochondriac.  That’s one reason I don’t mention the list of my other diagnoses like most healthcare bloggers do.

Postblog: Rheumatoid Arthritis is a heterogeneous disease, meaning that yours may differ from mine. Also, mine may differ from mine, over time. This is the nature of the disease and not proof of malingering.

Coming up on the blog: We’ll ask more about what doctors think RA pain is like and why they might not hear what we tell them.

Recommended reading:                                                                

• Part 1 of my description of RA: What Is it Like to Have Rheumatoid Arthritis: The Usage Principle
• Part 2: What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?
• My confusing quest: My Quest for Answers to Questions About Rheumatoid Arthritis
• My first thoughts about the wall: Managing Rheumatoid Arthritis: Transparency and the Wall

Compared to RA, pain in the necks like these should be easy to cure

Rheumatoid Arthritis pain can be aggravating. However, something has been just as aggravating lately.  It’s the pain on my head from banging it against this wall of ignorance. Almost every day I read some preposterous statement about RA or RA pain reported in the news media or a medical or science website.

Last week, there was the ABC News RA report which made it sound as if RA were all but cured.  Yet, the doctor was claiming that only one third of those with RA actually need to be treated with the modern medicines. We’re always told this is the best time to have RA. Does that make sense?

Whatever… I don’t have time to stay aggravated since I have too much else to do. But, if I blink, another one appears. This week, there was this report about computer usage and RA. I think this report was sent to me through at least a half dozen venues. The report claimed that keyboard (typing) skills are unaffected by RA. The first few times I heard it, I ignored it as just more ignorance. But, eventually, it bugged me to see how it was so widely distributed, and likely, believed.

Everyone seemed to pick up the story and run a headline like this: “Don’t worry that RA will affect your work” or “RA doesn’t slow typing” or “RA patients have no problems with keyboard use.” I had no intention of refuting the stupid little study here because it seemed like a waste of time. If anyone is truly curious about whether RA actually does affect typing, please comment below & I’ll consider writing a post to refute it properly.

 The point: Can anything be done about this RA PR pain?

A few hours ago, I had a lovely conversation with a new friend. She is a long-time veteran warrior against RA. As often happens between two friends with RA, the conversation turned to this: How will we change the misperception of this disease?  The first thing brought up is always the name.  You’ve probably heard it a thousand times: “arthritis has nothing to do with RA, so we need a new name.”  I’ve heard more discussions about this unfortunate name problem than Windows has updates.

The second thing we thought about was an accurate portrayal of RA to the general public. I have mentioned before how truthful medicine advertisements have done so much to improve public awareness for other conditions such as osteoporosis, which is just one of the problems RA’ers tend to have.

A third problem we might address is doctors. I’ve written about how little the RA I meet in person resembles the RA I meet in books. Which one do you think docs are trained to trust?

Do you think we have a shot at change? What do we need to do?

Next week: Do RA’ers just have lower pain tolerance? Yep, that’s a really being discussed.       

Related posts:

• We can make an impact: The Truth About Rheumatoid Arthritis Info Will Be Told!
• Are the patients doing their RA right? Is There a Typical Rheumatoid Arthritis?
• Put this in the books! What Is the First symptom of Rheumatoid Arthritis?
• Let’s get this straight: 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”

What if there were a cure for Rheumatoid Arthritis or you had a genuine remission from living with RA?

Like many, this post is inspired by a conversation with another person living with RA – actually, several conversations.  We aren’t dwelling on the negative, just dreaming about what we we’d love to do. I thought sharing it here might provide a hint of realism to those who do not comprehend what we lose while living with Rheumatoid Arthritis.

Some of these are things I would like to do again because I thought they were so wonderful, I did not give them up voluntarily. Others, I’ve never done before –bet you can guess which ones.

10 things I long to do

1. Get a dog. I could not imagine my life without a dog, but here it is.
2. Build beautiful gardens. I moved right before RA, leaving mine behind.
3. Finish my last quilt.
4. Ride a bicycle.
5. Go to medical school & become a doctor so healthcare professionals would listen to me tell the truth about living with RA.
6. Walk in an “arthritis walk,” pointing out how to the press that countless people cannot participate for themselves.
7. Paint intricate decorations onto hundreds of delicate buttery cookies. Give some of them away as gifts – Hey, they taste too good not to keep some.
8. Run for an hour on the beach barefoot at sunrise.
9. Have another baby.
10.  

I could not finish my list. It was too hard to choose one thing and leave everything else off the list.

I’m sure your list is unique.  What did I leave out?

Recommended reading:

• Fun description of the “adapt & repeat” of living with RA: The Shifting Sand of Living with Rheumatoid Arthritis
• Still doing some hard things by adapting: 6 Ways to Get Hard Projects Done With Rheumatoid Arthritis
• Why we can’t trust blood tests to diagnose RA yet: Blood Tests for Rheumatoid Arthritis, part 2

Another kind of Rheumatoid Arthritis Treatment: how people treat RA

Imagine treating a broken arm with a band-aid. How would it be if a heart attack were treated like the flu? What about telling someone with breast cancer to just go on a diet? Crazy.

However, people often minimize Rheumatoid Arthritis symptoms. When they do this to folks living with Rheumatoid Arthritis, they act like RA is a not a big deal. That would really be fine – if only it were true.

Recently, I asked RA’ers to tell me the most inappropriate things people say to them. I thought it might be funny if we looked at them all here at once. Of course, it might be a learning opportunity besides.

I’ve compiled a list of the top 20 answers I received via Facebook, Twitter, e-mail, and direct message.

1. Aren’t you feeling better yet?
2. You’re not old enough to have arthritis.
3. Oh, I know; me too.
4. Exercise would really help you feel better.
5. You don’t look swollen, sick, or ______
6. Have you tried counseling? Maybe you’re depressed.
7. Why do you walk so funny?
8. No, it’s not heavy. Here, hold this.
9. Have you tried the blue stuff?
10. You’re feeling achy. / The aches & pains of arthritis.
11. Why didn’t you try glucosamine (or Omega3 or gluten-free…) before you tried that medication?
12. Just drink this juice. (Or eat blueberries…)
13. Is that your handicapped parking tag?
14. You just need to lose some weight. (Or gain weight!)
15. I’m glad you’re better now.
16. At least it’s not cancer. It’s not like it will kill you.
17. I read about a woman who cured hers with…vitamin supplements, antibiotics…
18. You just have a low tolerance to pain.
19. My Grandmother had that.
20. I used Tylenol arthritis and mine went away.

How about you? Did I miss your favorite one? What do people say to you?

Note: A special treat coming up on the blog: an interview with a young lady who will inspire you.

Recommended reading:

• One more thing not to say: 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis
• Send someone this video! Working and Rheumatoid Arthritis
• Finding a good doctor: 21 Things to Know About Finding a New Rheumatologist
• I’m out to destroy the mythical RA! To Tell the Truth: Will the Real Rheumatoid Arthritis Please Stand Up?

Are there any sympathy rules for living with Rheumatoid Arthritis symptoms?

The other night, one of my boys said to another, “I’m not doing that. You do it. I’m sick.” Nothing serious – there have been several courses of cold and flu in my household recently. But, I raised my eyebrow.

Of course you can think faster than I can type and you are one step ahead of me. I thought: I’m living with RA; when do I get to say that? When is it my turn to say, “I’m sorry, I’m not doing that; my Rheumatoid Arthritis symptoms prevent that”?

What are the rules? When I was 8, I got to go to bed when I was sick. There were some perks to sick days.

What does Rheumatoid Arthritis pain have to do with a kidney infection?

Except for the Rheumatoid Arthritis diagnosis and thirty years of thyroid disease, I’ve always been very healthy.    Lots of RA’ers tell me that – probably it’s due to the extra strength immune system which also causes the RA. However, last Easter, thanks to my medically suppressed immune system, I had my first kidney infection.

What did the kidney infection teach me about RA?

The kidney caused pain in my lower back which was similar to Rheumatoid Arthritis pain. It hurt. I’ve described my high tolerance for pain before.

For a few days, I lived with the kidney pain, only mentioning it to my daughter. I had antibiotics. It would be gone soon. Suck it up.

Word did leak out about the kidney infection though. And what followed was startling. It still amazes me.

Someone called me on the phone just to sympathize. She said, “Ooo, that hurts!” Then, during a period of three hours, three different people called and said almost exactly the same thing. At that point, I’d been living with Rheumatoid Arthritis for over 3 years and no one had ever said that to me.

With a 3-day old kidney infection, three people went out of their way to say,”Ooo, that hurts” within three hours. Every one of these women is a kind, sympathetic, Christian woman. But none of them had ever expressed such sympathy to me before as I lived with the RA.

In case the reader does not have RA, let me be perfectly clear. The kidney infection did hurt and my fever was 104 F, but it was nothing at all compared to living with Rheumatoid Arthritis.

It has been 6 months and I am still haunted by this episode. Why is there so little sympathy for those living with Rheumatoid Arthritis? I don’t really want sympathy. I just want an answer.

I do not want sympathy; I want to be well. I want to do everything I used to do – and do it quickly and easily…  And I want to do it all by myself – without needing help or having people wonder what my problem is. I want to be the caregiver of my children for many years to come, not have them take care of me…

Meanwhile, living with the reality of Rheumatoid Arthritis

The Rheumatoid Arthritis diagnosis itself is devastating. Unsympathetic reactions are an added burden. We will be okay without sympathy, but I for one, am curious: Why is there so little of it for those living with RA?

Recommended reading:

• 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”
• My Quest for Answers to Questions About Rheumatoid Arthritis
• What is Remission of Rheumatoid Arthritis? Part 1
• Psoriatic Arthritis
• Is there a blood test for Rheumatoid Arthritis? Part 1