Empathy for Rheumatoid Arthritis Support

 

Empathy for Rheumatoid Arthritis: Zero to 60 in 15 Seconds

empathy rheumatoid arthritisWouldn’t it be great if someone could understand how we’re doing and have empathy for rheumatoid arthritis? Imagine describing how RA 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 getting it too.

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 put in front of us. 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?

Three categories describe your physical condition regarding RA: 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 could include a joint count.

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 answer from today:

“Aw, thanks for asking. Today, my backpack has several library books in it. I decided to take the easy road, so I’ve made it about halfway up the hill. But, going to WalMart the other day was more like plowing through an avalanche. About 15 joints hurt; I’m at about a 3.5.”

It was so kind of you to inquire.

Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

3 thoughts on “Empathy for Rheumatoid Arthritis Support

  • October 4, 2017 at 11:11 am
    Permalink

    Kelly,
    I have been in the grips of the most intense flair I have ever experienced. The rheumatologist gave me a kenalog shot which relieved the symptoms dramatically. My most recent treatment is dmards and orencia infusion. Enbrel and humira did not work. Since I am on medicare the only thing they pay for is infusions. He says the only safe infusion left is rituxan. With your experience is that true?

    Reply
    • October 15, 2017 at 10:49 am
      Permalink

      No, Tony. I never heard that. They (biologics) all have similar risks and possible side effects. The only thing I can tell you is the same thing I do: weigh the risks against the benefits. If the drug does work for you, it can forestall damage or even give you your life back. If it doesn’t work for me, I won’t take it. Nowadays, drugs get a 3 month trial to see if they help. An exception is methotrexate, which can take even longer to work.

      Reply

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