It’s all in your head — NOT!

I’m going to take a small side step from my normal topics today. None of us are perfect in body or mind, and many people I know have some chronic condition that cannot be ignored, but society demands that we all put on a happy face and say that we’re “fine.” I know I’ve alluded to it before, and I think it’s time that I say it clearly: I have a disease called Rheumatoid Arthritis (RA).

Most people, upon hearing the term, immediately associate it with the sore joint issues that someone they know/are related to/have heard of has experienced. Then they look at me, generally a glowing and radiantly alive woman, and get a confused look about them. Nothing looks like it hurts. You see, I’m one of the lucky ones: I have responded well to medications and chemical therapy and have days when I don’t hurt. However, RA is NOT anything like osteoarthritis, although some of the symptoms are indeed similar. RA, or Rheumatic System Disease as I prefer to call it, is an auto-immune disease that affects every organ, every system, and every single part of my body. The precise cause of the disease is yet unknown; similarly, the cure does not yet exist. It is a lifelong condition that cannot be completely alleviated by exercise and diet, despite what some well-meaning websites and other media might promote as the truth. And no– it’s not weight related.My rheumatologist, Dr. Z, advised me when I was first diagnosed that I could lose weight, but it would not affect my RA. As of today, I’m down 58 pounds from the time I was diagnosed. Has my experience of RA pain changed? Not one iota.

So what is the truth? This disease is a bear. The only way anyone knows I’m in pain is if I tell them, and I would rather chew rocks than admit a weakness. My weeks are punctuated by specific days on which I must take certain medications and cope with their side effects. Friday evenings (when one of my weekly medications wears off) can be exhausting and often agonizing. Saturday mornings (when that same medication) is newly on-board, my cognitive abilities are diminished and I cannot think properly because of the side effects. Sundays are dicey and can be either very good or very bad, depending on how I reacted to that week’s medication cocktail. If I get overconfident and overuse a joint or set of joints, like when I made truffles the week before Christmas, I will have elevated and often debilitating pain. God help me if I run short of a pain medication for some reason, like when my RA-related NSAID refill got lost in the mail a few weeks ago.

I often think that people’s perception of my disease is that it’s all in my head. If I’m in that much pain, it should be visible, right?  If you ask me to describe my pain on a classic numerical pain scale, it’s hard to quantify. What does that “1” mean? Since we all experience pain differently and have different thresholds for it, how can a simple numeric scale describe pain adequately? I much prefer the Wong-Baker pain scale that uses facial expressions as an indicator.  I giggle that the Wong Baker scale is meant to be used in children and only “sometimes” in adults.  If I see someone crying, I assume that the person has experienced some sort of mental, physical, or emotion pain– a safe assumption, in my experience. So why do medical providers so often insist that we quantify the subjective experience of pain?  If I say I’m at a 4 today, does it matter that my friend my consider her pain as rating a 2? My point is that the pain scales are an inexact science at best, but are used as an absolute measure of our discomfort. Does anyone besides me see the problem with that?

What’s the solution? Communication. Period. People need to communicate to their medical professionals completely and honestly how they feel. Medical professionals need to document the patient’s communication and ask for clarification with compassion. Finally, both sides need to understand that pain isn’t isolated to just the physical or mental or emotional aspect. Most often, it’s a combination of all three, and open communication is the only way to un-knot the situation and find solutions.

So when you see someone in pain, ask them what they need. Sometimes it’s a band-aid, other times it’s a hug. The critically important part is the dignity of the human connection and an acceptance that a person’s experience of pain is as real as anything else in the world.

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