Facing the truth

Over these many years of dealing with RA and encountering, working with, and supporting many others with RA, I have come to realize something I think is very, very important.

It cannot be stated strongly enough how crucial it is to acknowledge the presence of RA as real in your life. Now what do I mean by that and where is this coming from?

Well, let me break this down.

When one first begins to have symptoms that drive them to see a physician or other health care provider to find out what is causing their pain and discomfort, they very likely do not have a clue what is going on. Or, they think it is a much simpler health issue that can be treated and then it is over and done with.

The fact is, it often takes months, if not years, for RA to be diagnosed and confirmed, although that is, thankfully, improving. So, once diagnosed, RA patients often are confronted with the reality of managing a chronic disease that is characterized by chaos, fear, ebbs, and flows.  This time of uncertainty and often a lack of clarity can lead to denial and a lack of acknowledgment of the reality of a disease like RA. A disease that actually requires a clear-headed purposeful approach.

I mention this because it needs to be addressed and attention paid by our medical folks and all of those on our support team, personal and professional. It is too easy to just dismiss this time period and hope that the patient will come around to understand the reality of RA. As research has undisputedly shown, early and aggressive treatment can stem, if not halt joint erosion.

On the flip side, the longer you go without medically addressing RA, the more long-term negative outcomes you will have. This is a fact. I see it all the time. Just the other day, I met with someone who has severe joint deformities. I do want to preface this with the fact it is entirely possible that erosions and deformities can happen very quickly in the course of the disease or despite treatment or if you are one of the people who was diagnosed years ago, before the newer, more effective treatments were available. But that aside, it is nothing short of tragic if, as a newly diagnosed person, you do not acknowledge or understand how crucial it is to accept the truth of RA and understand the course of this chronic disease.

Back to this story. This person had severe finger and hand deformity and so I asked how long she had been diagnosed. She told me 5 years. I was nothing short of stunned. I expected to her to tell me 25-30 years. My next question was how was she dealing with this? She said she just took pain relievers, both OTC and prescription for several years, despite going to a physician who told her quite plainly that he suspected RA. I asked her what he suggested. She said he kind of left it up to her to some extent.  He did refer her to a rheumatologist but she did not take his advice so she continued to see him.  I asked her if she did any independent research on the disease, did she check out any treatment options, did her physician suggest any other treatments or explain the reality of RA and how it was different from what many of us think of as arthritis. She said he told her there were some medications designed to treat RA, but again suggested she see a rheumatologist which she did not do. So now, here she was, 5 years in, with irreversible damage, asking why my hands did not look like hers even though I had been dealing with this disease for 20 years. I told her, as compassionately as I could, that confronting the disease, learning all I could, seeing a specialist, acknowledging the reality of RA were the reasons.

So here is the thing about this story. This is not an isolated incident but rather I have seen this over and over and over.

So, how do we change this? From my perspective, it takes proactive action by the medical professionals who treat RA AND the support team who is there for the patient.  Where were the people who watched her hands become deformed for years and years? What did they say or do to encourage her to go beyond the ways in which she was handling this problem? Maybe some did try to get her to do more, maybe not. Either way, she is the one who now must live with this and that is profoundly sad to me.

We must continue to educate the general public about the realities of RA, and we need to reach out to folks who have it. We need to promote that our medical professionals be persistent and honest with RA patients. And above all, we need to encourage all of these groups and individuals to NOT GIVE UP on a newly diagnosed patient. They need our advice. They need our support. They need our encouragement. Most of all they need our honesty. So that they can move forward in a positive and determined way, armed with the knowledge they need to manage RA.

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