Why say a patient #FAILS treatment when RA treatments fail patients?

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SKRDad's TweetRA patients are brave and optimistic, as I’ve said. I’ve never been around such a hopeful, resilient crowd. We continually adjust because the disease is progressive and persistent. And we repeatedly hope for the best because there is always one more treatment or therapy to try.

Rolling with the punches gracefully becomes sport for us. We spare others our constant pain by not mentioning it very often. And that sometimes backfires because people assume we are only in pain when we say so.

Is it the patient’s responsibility to MAKE treatments work?

When we try new treatments, we may feel a responsibility to be confident and we are. Optimistic, that is. As patients, we feel a responsibility to help make treatments work.

Does anyone believe treatments work mainly on the basis of faith? If that’s right, why can’t we save a pile of money and put our belief in some cheap aspirin?

We try our best, but the outcome is not our fault.

Expecting the best

I certainly expected to get better with Humira. And I was sure that doubling the dose to weekly would make a difference. And then… I was fully convinced that Orencia must be a stronger cure for RA – after all, you get it with an IV. At a cancer center.

And again with the Actemra since it was the newest thing, which makes it the best, right? I really did sit on the edge of my seat waiting to jump up so I could hold a tennis racquet or run around the block. Which I did try to do a few times by the way, but that’s a story for another day.

Carol, Kelly, & Gene

Did I fail?

And more to the point, does everyone with RA fail who does not have a strong response to treatment? Only about 20% of patients get a result that is considered 70 improved. Not normal, just “improved.” Not a majority, just 20%.

Yet the rest of us “fail”?

In the immortal words of my 15 year old, “Dude. Really?”

No, we don’t fail at all.

If RA flares and remits, then we rejoice in the good days. Others continue to hope for a remission even if we’ve never had one. We hope in research. In the FDA. In better access to therapies.

Failures? Hardly. We stick together, break new ground, and create the first non-profit specifically to fight for the needs of Rheumatoid patients.

It’s what we do. It’s how we know that Rheumatoid Disease is something we have, not something that has us. We do not allow an illness to define us, even if it prevents us from running on the beach – for the moment anyway.

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Kelly Young. All rights reserved.

This entry was posted on Wednesday, July 11th, 2012 at 4:55 am and is filed under Treating RA. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.


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