Tuesday, February 2, 2016

How Bad Is It Really? Perception vs Realty

The Real RD Fact #5: Rheumatoid disease is often an invisible illness.

This is the first article on rheumatoid disease (RD/RA/rheumatoid arthritis) written for Rheumatoid Awareness Day. It is centered on RD Fact #5: Rheumatoid disease is often an invisible illness.

The words from the company CEO cut into me like a knife. “I’m sorry, but the truth is that perception is reality,” he said.

It wasn’t the first time I had heard that, and it wasn’t the last. But it didn’t hurt any less. The truth didn’t matter. I was being judged by outward appearances, not by what was really going on. And even a valid explanation wasn’t going to do. To him, perception was all that mattered. Everything else – my feelings, or even the facts – was irrelevant.

If you’ve ever been misjudged, you know how much it hurts. It hurts when you’re misjudged by strangers, and it is even more painful when it is by family or friends. “Don’t they know me better than that?” you find yourself saying. And yet, seemingly, they don’t.

Unfortunately, being judged or misjudged is a frequent occurrence in the life of those with rheumatoid disease. It comes with the territory of having an “invisible illness,” one with few outward symptoms.

I find myself battling the “perception vs reality” war often. On-the-water selfies have become a tradition for me and my kayaking husband, as they serve to document our paddling travels. Likewise, my tween daughter and I love to play “silly face” with the camera, frequently posting our antics on social media for our friends to see and to preserve our fun memories when they pop up later in our Facebook feeds.

The only problem with this is that with every picture of fun that is posted, the perception becomes that I’m never suffering with my rheumatoid disease. But why would I post all about the pain? The last thing I want to be is a public whiner, and I really do try and keep a positive outlook. Even my sunny posts designed to encourage others often do double duty, encouraging me when I need a lift.

Then there is the “fake it till you make it” scenario. That was me this morning. Dead tired, with a knee that had throbbed all day yesterday, I dressed up in business attire for a meeting. I was greeted with “Oh, you’re looking great!” by several people. I smiled, thanked them, and tried my best to stay focused on the issue at hand, when inside I was wishing I had been able to rest at home a little longer and wear my comfortable sweats and tennies.

*Sigh* Perception vs reality at work again. I knew that my appearance would make an impression, and I couldn’t afford to be judged a slob. Despite how I felt when I woke up this morning, or how I feel any other day, I am determined not to give into my disease. So I suit up and show up. Day in, day out.

Of course, the issue with keeping your pain from others on a regular basis is that there will in fact be times you can’t fake it and you can’t make it. When you’re too tired to work and you have to take a nap. When your feet hurt too bad to stand and do the dishes. When you have to wear the comfy (frumpy) clothes because your hands can’t manage buttons and zippers. When you (literally) can’t move off the couch or kneel at your child’s bedside to tell them that story you promised.

It is in those honest moments - when we are too overcome with pain or fatigue - that we are at our most vulnerable. To those around us, we may seem lazy. Slobby. Slouchy. Pathetic even. Because we were “just fine yesterday” we are perceived as whiners today. The reality, however, could not be further from the truth.

Ask anyone with rheumatoid disease, and we want to do more. We grieve the loss of our time with others. We guilt ourselves too, over not being all that we would like to be as employees, as parents, as spouses, as friends, even as adult children who would like to do more for our aging parents. We want to be more too. More active. More fun. More healthy. More … of all we used to be, before our autoimmune disease lay claim to our lives.

The truth of an invisible illness like rheumatoid arthritis is that perception clearly does not equal reality. The question is what will you do about it? Having an invisible illness gives me a choice of whether to stay steeped in my own pain, or whether to live as a fraud.  For me, it is about balance. I will find joy where I can, celebrate the tiny moments of pleasure, endure the pain, and be honest about who I am. RD affects me every day. There is no escaping that. But it does not define me. And for that, I am grateful.

If you have an invisible illness like rheumatoid disease, how do you balance perception versus reality? If you aren’t chronically ill, how do you perceive those who are? How much of a challenge is it to accept that their reality may be different – and more painful - than the positive image they are projecting?

How Bad Is It Really? Perception vs Reality originally appeared on Spring Sight blog, by Linda W. Perkins. Click here for more posts. Get even more encouragement by following me on FacebookPinterest, and Twitter

Many of Spring Sight's posts can also be found each week on Grace Esedeke's EncourageMe MondayCrystal Storms' #IntentionalTuesday,  Kelly Balarie's #RaRaLinkUp, Holly Barrett's Testimony Tuesday, Arabah Joy's Grace & Truth, Holley Gerth's Coffee for Your Heart,  and Woman to Woman's Word Filled Wednesday.

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  1. Great post, Linda! It is such a tough balance sometimes... like you, I like to show the fun and positive, because that's where I like to focus. So I guess the question is how to be "real" without being negative? No easy answers! No body wants the "sick" perception at work...though I had a heating pad at work today trying to ease some pain -- it definitely got noticed and even commented on. So I guess I showed some of the reality!

    1. Yes, it is difficult, for sure! We want understanding, but not pity or prejudice. You are such a great example, Dana, of someone who's willing to share your story in order to help others, while still staying in the mainstream and achieving so much in your personal and professional life. Thanks for all you do, and for stopping by to read my blog! :-)

  2. Hi Linda,

    I just happened to see this. :) Please let me know if you'd like to have this post added to the blog carnival I'm putting together for RAD posts (here: http://rawarrior.com/rheumatoid-arthritis-awareness-pin/). You can email me if you'd like.

    1. Hi Kelly! I wrote two posts for RD Awareness Day, this one and "I'm Not the Same as I Was, or Will Be" (About RD Fact #3), and would love to have them included in your blog carnival! I will email you. :-)