Is This the Best Time to Have Rheumatoid Arthritis? Part 1: Quality of Life

We hear it all the time: “this is the best time in history to have RA.” How true is that? Let’s examine the facts.

But first, what RA-er can hear that said without a reaction of dismay? No one who actually has Rheumatoid Arthritis claims that there would be ANY good time to have RA. Of course, we are too polite to say it that bluntly, but it’s accurate.

"QUALITY OF LIFE"

One study showed that RA-ers who took abatacept (Orencia) had improved quality of life as measured using standardized questionnaires. The patients felt that they could do more. But how much more? Could they do what they could do before the onset of Rheumatoid Arthritis? No. They could do more with Orencia than without Orencia. That is improvement, but it is also relative. Let’s break down that “quality of life” slogan.

How does Rheumatoid Arthritis affect quality of life?

Pain

Pain has an obvious impact upon quality of life. For most RA-ers, treatment with DMARDs reduces pain to some extent. But, there are also answers to what I call Leftover pain. Today there are innumerable medications and therapies to treat pain.

Why do I know so many RA-ers who live in so much pain? I have read research which proves that doctors routinely under-estimate the pain of their patients. Proper pain management would be one of the most dramatic ways in which modern advancements can improve the RA-ers’ quality of life.

Depression

Numerous studies have shown that depression follows Rheumatoid Arthritis like footprints in snow. Rheumatoid Arthritis makes an impression on a life that cannot be ignored. If the RA is severe or not successfully treated, the impression can be deep. Our Rheumatoid Arthritis and Depression post looks at this more closely.

Disability

How can you measure the impact of disability on quality of life? The statistics paint a dreary picture. Researchers say they are difficult to track due to inconsistencies in Rheumatoid Arthritis diagnosis, especially across various countries. (See How is Rheumatoid Arthritis Diagnosed?)

Career-ending disability due to RA is still extremely common. Eighty percent of RA-ers say that every aspect of daily life is more difficult. One-third of RA-ers no longer do the same work within 5 years of diagnosis. After 10 to twenty years, half are considered severely disabled. Two-thirds say they have difficulty getting out of bed. And one-third cannot get dressed on a hard Rheumatoid Arthritis day. (Some stats quoted here on About.com.)

Fatigue

I call RA fatigue the Kryptonite of Rheumatoid Arthritis. RA fatigue incorporates low energy, physical weakness, and rapid exhaustion all in one fine package. If you read What Causes the Fatigue of Rheumatoid Arthritis, you know that studies show that modern Biologic treatments for Rheumatoid Arthritis do reduce fatigue for many RA-ers.

Relationships

There is a frustration in not being able to describe to others the pain, weakness, and disability of RA. Sometimes they are too intense for non-RAers to imagine. This communication problem leads to improper expectations. And worse, the Rheumatoid Arthritis that causes all of these problems is invisible – unless you have x-ray vision.

All of this can bring confusion and disappointment. Difficulty in understanding how grueling Rheumatoid Arthritis is can create a barrier between people. Well people don’t want to hear about pain and illness all of the time; and RA-ers don’t like being misunderstood.

Every day, RA-ers communicate to me their aggravation that people “just don’t get it.” The strain this places on relationships is obvious. Loneliness is too often the result.

Outlook

Rheumatoid arthritis is a progressive disease. So RA-ers know that life will probably get harder instead of easier. Eighty-one percent of us report feeling frustrated that we are no longer in control of life.

Then again, Rheumatoid Arthritis can sometimes have remissions. And some patients with less severe RA obtain good control with drugs. Alternatively, the destruction of RA can be answered with astonishing surgical techniques. So, the forecast of the future is not necessarily bleak. But, it is still rather foggy.

Is this the best time in history to have RA? Tomorrow, in part 2, we look at QUANTITY of life: Mortality and Rheumatoid Arthritis

Rheumatoid Arthritis and Depression

New Depression / RA Study Is Not Surprising
Rheumatoid Arthritis is in the news this week. It seems researchers have found that most RA patients battle depression. The study was done with 75 RA patients, mostly women.

Was anyone surprised? I have never met anyone diagnosed with Rheumatoid Arthritis who did not experience at least some depressing thoughts over the diagnosis. It is a normal reaction to news of such horrifying proportions.

For me, it was like a sentence without a crime. Of course I grieved! I grieved the myriad things which I had planned but would never do. I grieved my future. I grieved the delight of running on the beach. I grieved the pleasure of being able-bodied.

There is a normal grief process with several stages. Psychologists call it the normal grief process for a reason. It is considered healthy to encounter and process grief in each of those ways. And then it can be put aside.

Clinical depression is a more lasting sadness. It is like getting stuck. Often, counseling or even medication is needed to become un-stuck.

That’s the catch. Most things in life tend to cycle around: We have hard times, but they usually pass. Then there are some better days. There is an opportunity during a stronger period to process what has occurred.

But Rheumatoid Arthritis never reads the rule book. It tends to only progress. (That means “get worse.”) So, there may never be a period of lower stress during which you can process the feelings and move forward. Instead, there are often more shocking developments and more losses to grieve as the days go on.

It is pretty difficult to avoid getting stuck. Remember the diagram of the 4 courses of RA? Who could scale those peaks and not fall into a pit?

What can we do?

We can allow ourselves to grieve. We can purposely move through the normal stages, even if we must do it repeatedly (since the onslaughts of the Rheumatoid Arthritis are repeated). We can even welcome the grieving as healthy since we have honestly lost much.

Second, we can connect with others who understand and validate our grief. Often, those close to us do not understand what Rheumatoid Arthritis is or have denial issues about RA. Imagine trying to process grief over the death of a friend while folks are telling you “It’s not so bad.” As if it really is not. As if there had not been a death. That denial would not help the grief process.

Third, we can examine our medications and supplements. The study in the news today found that RA patients who use steroids are more likely to become depressed. Some supplements like Omega fatty acids are good for the RA symptoms and for our brains. Discuss depression with a doctor and consider what might be changed.

Fourth, of course, if we become truly stuck, we should ask for help. Sometimes, as mentioned, this means counseling or medication. At least for a spell.

Once in a Bible study on I Peter, I was taught something that really helped me: Stop being surprised at the trial you are enduring. You have brothers who are enduring the same suffering all around the world.

Peter was referring to persecution. But, it helps so much to stop being surprised at our suffering. No one is surprised at the grief of a cancer patient. Getting diagnosed with Rheumatoid Arthritis is bad news. We ought to grieve.

RA / Depression study: Science Daily article UPI article Pysch central

Be Your Own Counselor with RA

Fighting the Depression of Rheumatoid Arthritis

It is great to have a friend. And sometimes professional counsel is necessary. But today I was thinking that we can also be our own therapist.

Here are some ideas that I tried not to let get away...

1) TAKE NATURAL MEDICINE
No, the really natural kind: endorphins. Do something that releases endorphins. There are some foods, like dark chocolate, which can lift you up.
Laughter will rush them thru your blood So read the comics, or make a funny face, for pete's sake, just laugh.
Even crying, if it's needed, can release some relaxing chemicals.
Exercising, if you are able to, will give you an endorphin rush.
If you know more ways, please share!

2) MEDITATE ON A HOPEFUL TRUTH
This is not just think happy thoughts. It has to be true; it won't work if it's a false hope. But there is always some hopeful truth you can find. Here are just a few examples:
It may be science: They are looking for a cure.
It may be simple: Soon, I look forward to lunch with a friend.
It may be silly: My dog still loves me.
It may be scripture: God's mercy is great. Heaven will be awesome.
Repeat this truth quietly throughout your day. Ruminate upon it the way you usually do with your problems. Let it counsel you.

3) REFRESH THE PAGE
Changing your environment can change the picture and make you see things in a different way - or see something you did not notice before. For me this is going out and looking at the sky - day or night. Or seeing the ocean or some wildlife. It's more than just a distraction; it is regaining a perspective that is more accurate. Our problems are actually kind of small disruptions in perspective to the whole of the natural order of things.

4) USE MUSIC
Music is like an IV. Somehow God made most of us able to receive truth directly into our souls through music. It is a powerful resource we probably ignore because we think it takes too much time. But if we say we don't have time to listen to the music that we know will uplift us, maybe we should counsel ourselves about our time / priorities. Besides, there's time in the car, as we eat, while we dress, do chores...

5) CHALLENGE THE STATUS QUO
Ask yourself whether this is the person you want to be.
Maybe it is a habit that should be picked up or put down.
Maybe we can make a small course correction today. Or a big move.
Maybe we can reconsider something we once set aside: like faith in God; or a certain friendship.
Whatever it is, we can question the status quo and encourage ourselves to move on down the road.