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Reality and Appearance

Reality and Appearance

Living with Rheumatoid Arthritis is often a subtle masquerade of appearances: a smile when one is in pain, the forced buoyancy of energy when one is exhausted, the illusion of “all is well” when life feels in the balance, and the frequent utterings of hope when the future haunts like a tempest threatening. Appearances and reality are confused when social etiquette, politeness, tradition, and a certain unspoken disapproval of frankly discussing one’s health permeate interaction and dialogue with others.

“Just getting through it” is often a reality of rheumatoid arthritis when the pain, inflammation, and fatigue thrust their malicious claws into my life, permeating every minute with discomfort.  At times I believe it is necessary to do so; how else will I get done what has to get done? How often, when I am alone or finally finished with the day, have I sat down, shoulders slumped, hands holding my face, and uttered under my breath the disappointment, frustration, and pain I actually feel?

A blend of reality and appearance, is life as I know it with RA.

There are different ways to view this problem. One can, certainly, unapologetically discuss one’s health, neither seeking pity nor support, but simply stating the facts. If someone else can’t handle that, than that is their problem — health and life are inextricably intertwined, so let’s not pretend. At the same time, in work and career situations, or in new social groups, treading carefully may be called for, and knowing how to navigate can help avoid frustration.

I often see a misinformed current of popular belief that blames illness on the sufferer, as if all diseases were merely a matter of lifestyle and the chronically ill failed to live up to the requirements of health. Such naiveté is borne either from egoism, ignorance, or a deep fear that shuns the reality inherent in life. Perhaps it is a combination of factors and personality, I don’t know. What I do know is that the view that the chronically ill are partially or even wholly responsible for their lot is more common than I would have believed before being diagnosed with rheumatoid arthritis. Certainly there are lifestyle risk factors to disease, but there are also genetic, social, environmental, and economic risk factors. One simply cannot view something like rheumatoid arthritis in a vacuum. Yet, in a vacuum I am often put when I tell the wrong person about RA. One need only hear a few responses along the lines of “just believe in the outcome you want and RA will go away,” to realize that one inhabits a different world that makes communication with some people impossible.

So what to make of reality and appearance?

I believe it is important to never apologize for having rheumatoid arthritis. Likewise, I believe a populace educated about chronic diseases like RA is our best bet for better policy, insurance coverage, and public research funding for novel interventions, therefore I make every effort to educate others. At the same time, you cannot use logic and reason to persuade someone who holds unreasonable and illogical beliefs, therefore there are some people I avoid discussing RA with entirely. On a different end of the discussion, there is the fact that my life often requires me to keep moving, and to fulfill responsibilities whether I am in pain or not. I often simply choose to not voice the reality of a given day for my own psychological health of not dwelling incessantly on something negative that I cannot change. Add to that the fact that for me, the disease is episodic, and there are times when I feel good enough, am genuinely energetic and gregarious, and my passion that has been hampered while in pain, is unleashed in a flurry of activity. To the onlooker I may appear like I don’t have rheumatoid arthritis at all. The reality is that the circumstance, time, observer, and the whims of the disease itself, can dictate what others see.

Appearances can belie a harshness that is just out of sight, but felt and lived.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • PKAT
    3 years ago

    Anyone have a good suggestion on what to say when someone goes to shake your hand? My fingers and palms are pretty sensitive sometimes and at work I am often introduced to people. Not sue on a polite way to say I don’t want to shake your hand without detailing my medical issues. Thanks in advance for any advice you can offer.

  • suann
    3 years ago

    My hands are crippled and hurt so bad, the last time someone shook my hand, O MY GOLLY GEE…I thought every bone in my hand was broken,, so now ,I say I would like to shake your hand but at this time I am not able…if anyone would have told me this was going to happen to me I would not have believed them, it sure isnt a picnic..hugs to all.

  • Connie Rifenburg
    3 years ago

    Oh this is all so true… so true. Thanks for stating it so well. Even my Uber drivers now have the “cure”….. Kale! I finally had to say that I understand that with this disease, some things work for some and not for others. But if Kale were truly the ‘answer’ (as well as a few other of her ideas) I asked if she thought that anyone would still have the disease? She did become quiet. But it took many deep breaths to listen politely and not give a sarcastic remark as to where my medical advice was coming from (i.e. my Uber driver). ha! It’s just one more thing we must find humor in I guess.

  • DParker
    10 months ago

    Don’t you love it when you get comments like this! Or yoga is going to cure you…lol. It will help but never cure us. God Bless these holistic practices and they usually come from very young people, who have no idea what we go thru…like had RA for 20-30 years. I just agree with them and think to myself…one day you will know, grasshopper

  • magienoire
    3 years ago

    Thank you for capturing how this disease impacts the most routine, every day interactions. By far, the fatigue is the hardest one for me – hardest to explain to others and hardest to fake it and push through.

  • mes133
    3 years ago

    I believe all that you say is true, but I think most of us “put on the face” for several reasons. For me, I try to keep my RA history to myself at work. This is because I am trying very hard to get ahead, and laws or not, illness is perceived as a weakness.

    I also try to minimize the complaining to my friends and family because most people stop listening fairly quickly. I am not saying they don’t care just that if the only thing I have to say is a negative they are going to stop listening, calling or visiting pretty quickly.

    Finally, I do believe that by projecting yourself as healthy and pain free you can actually find a. Moment or two of distraction, where your disease is not consuming you every second.

  • suann
    3 years ago

    Mes, I agree with you ! I hardly ever see my friends or family anymore, no one ask me to go out to eat or for a ride or to the store.it gets pretty lonesome around here, I try not to think about it tho, it will eat me up inside if I dwell on it..

  • Michael Booth moderator author
    3 years ago

    Hi Mes133, thank you for your comment. I am not sure that we differ in perspective or reasons for “putting on the face.” I think both your comments about the disease possibly impeding career advancement through others viewing it as a weakness, as well as not dwelling incessantly on the negative aspects of the disease for psychological health, capture the essence of what I was trying to communicate.
    There is a lot of truth in what you have said about family and friends not wanting to be around constant negativity as well — a definite additional reason that many of us blur reality and appearance.
    Wishing you the best with RA and your advancements at work. — Michael (RheumatoidArthritis.net team member)

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