Surveillance, Seeing, And The Truth

RA Guy Adventures of RA Guy 9 Comments

Today’s post is dedicated to everyone who has supported me on my journey through life with rheumatoid arthritis.
Near and far, you know who you are.

Surveillance CamerasRheumatoid Arthritis Guy is convinced that we live in an Orwellian world of Big Brother. No, I am not talking about the fact that we are surrounded by surveillance cameras, both visible and hidden. Neither am I talking about the fact that every non-cash transaction that we conduct will probably be stored in some hard drive for who knows how long. Medical records. Phone calls. Emails. Text messages. No, I am not talking about any of these things.

What am I talking about, then? Well, I am convinced that anytime I make a statement claiming that some joint or some part of the body is doing better, that somewhere an alarm sounds – and the person behind the rheumatoid arthritis curtain immediately turns up the dial from “mild discomfort” to “extreme overload”.

I’m kidding, of  course (if only because even any explanation – like the one presented in the previous paragraph – would be just too easy!) Only yesterday did I write the following in my post: “my wrists are doing much better than they were just a few weeks ago”.

What happened just an hour after publishing these words to my blog?  Would anyone like to take a guess? (As if we really have to guess.) My hands flared up like almost never before.

Later in the afternoon, as my joints were being examined by my physical therapist, she asked me if I was sure about my request that the entire session  focus on my hands. While my wrists, knuckles and fingers were visibly inflamed and sightly bent out of share, so too were my knees and my elbows. (One of the few good things about having extreme pain in one area is that if it is really bad, it can actually wash out lesser – but still substantial – pain in other parts.)

Right before we started I turned my hands palm-side up, as I want to point out the specific areas that were experiencing the most pain. Both the therapist and I were shocked to see what looked like thick purple marker lines all over my palms. Well, I learned a new word yesterday: vasculitis. This is when blood vessels in the hands become inflamed and burst open, causing dark purple spots to form under the skin. (Bruises, basically.)

Needless to say, 90% of the session was spent on my hands. (The remaining 10% was divided between my knees and elbows.)

As I watched television during the evening, and as my hands felt like they were roasting on an open fire (chestnuts, anyone?), I realized that once again I was focusing on a certain thought that frequently seems to take center stage whenever I am in the midst of a major flare.

In this world of constant surveillance and electronic gadgets that we live in, it is sometimes easier to see everything except that which lies right before our own eyes. Along these lines, I feel very hurt that some of my family members continue to deny, rather than accept, the reality of my life with rheumatoid arthritis. To them, my illness truly is  invisible. They cannot see it.

This past week I read a lot of comments and received private messages from people thanking my for my 60-Second Guide to RA. Many told me how this guide helped them talk to their friends and family about their life with chronic illness and disability. Up until now, I had only privately observed, with irony, the fact that some of my own family members know next to nothing about  my life with RA – despite my repeated attempts to the contrary.

I was a little hesitant to write these words, as they are very personal in nature – but many times during the past few years I have heard similar sentiments  expressed by others living with chronic illness and disability. For this reason, I decided to go ahead and write about this topic.

And in doing so, I have come closer to seeing and accepting some of the truths in my life, that lie right before my own eyes.

Yes, it is the truth that my disability goes unrecognized by some people who I consider to be close in my life.

Yes, it is the truth that this often causes me a lot of personal pain.

But what I guess to be the final truth on the matter is that ultimately, I need to accept this for what it is – something beyond my control – and move on, once and for all.

Because in the end, every second spent fretting about the actions/non-actions of other individuals – from close friends and family to strangers on the street – is one second that is better spent taking care of myself – body, mind, and soul.

This is easier said than done, I know. But sometimes, the most important thing is to take that first step.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 9

  1. Linda C

    I so understand all of what you wrote. I could write pages on the subject of it. However, I do want to make this comment..please, please keep up with your physical therapy, especially on your hands. I am living proof of what might happen..losing the use of your hands, being disfigured, etc.

  2. JG

    As if the illness were not enough, the road along which the suffering travel is fraught with those who deny them at every turn; friends who feel helpless, doctors who don’t care, employers that are unsympathetic, and family members who refuse to educate themselves or even acknowledge that suffering. And it sucks. The pain is like no other and there is no drug or therapy to assuage that. But you do get that “find out who your real friends are” experience and must come to realize the reason people are in denial are ultimately because of their own issues, not yours.

    I feel so sad for you, for all of us who have to deal with this along with the disease that ails us. Rest assured there will be a moment something “clicks” with each person who has failed to acknowledge your suffering, but until that happens, the only one who knows what you’re going through is you. Keep taking care of yourself.

  3. Erika

    Isn’t that life? What goes up must come down. At least you have the ability to work through the pain. I’m sorry some of your family doesn’t recognize what you live with. Some of my family doesn’t understand either, I don’t think they want to understand. Hope life goes up for you again!

  4. Kim H.

    I’m really sorry you’re experiencing new symptoms. I know that I probably shouldn’t, but when I flare or have something new and ugly happen to me, I can’t help but feel a little out of control (subject to the vagaries of fate) and as if my own body is somehow betraying me.

    And the whole thing isn’t made any easier by that ironically non-superhero “power” of the cloak of invisibility, is it?

    Of course, for others to accept our disability, we have to be able to accept it ourselves. And as you noted in an earlier post, that often happens only in stages. Sigh.

  5. Miss Waxie

    Well first RA Guy, I’m truly sorry you’re in such a horrible flare. I more than know your 1984 nightmare – I my self, recently recieveced the good news that my SED rate is lower than it’s been in 5 years…and first I though Great!!, then..I thought, oh god, i just flipped the irony switch, didn’t I? I feel like being happy about a health victory means i’m minutes away from a flare. Which is a really depressing way to live.

    …On an equally frustrating topic, I’m sorry some of relatives are less than supportive of your condition. Like so many other who will read your post, this too, resonates with me. Along with medication side effects, this is another silent part of chronic illness. …At least we have each other, right?

    Feel better, RA Guy, I’ll be thinking about you and wishing your joints the best of vibes!

    – Miss Waxie

  6. Kali

    For me, the frustrating thing is that while my family has been startlingly accepting of the physical side of becoming disabled young, the mental and emotional mess that come with it? That they do not get, nor do they want to get.

    I tried to explain to my mother how offensive and prying it is to have strangers ask me about my medical condition. I was told I had a bad attitude, and should be glad that they aren’t ignoring me, because all of the people with disabilities she knows complain about how people ignore them.

    I hadn’t realized that it was an either-or, with no option of just being treated like a normal human being /irony

    I hope your hands are brought back under control soon!


  7. Just Christine

    Today your blog really resonated with me. I understand the roller coaster effect of this disease. And also the difficulty for those who love us to understand the disease and its physical and mental challenges. I, for one, hate roller coasters! So, I suppose I can understand why my family and friends may not want to “jump on.” Here’s hoping I can learn to accept what they can give or understand and just move on, taking care of me. Thanks, RA guy!

  8. tessie

    Oh me. Oh my. I TOO awakened the RA gods behind the curtain! Went to my rheumy appt., happy to report for the first time since diagnosis a year ago that I was finally feeling better.
    That evening I was back in my splints, hurting all over, and my hands haven’t calmed down yet!!
    I’ve never been superstitious before…but now I’m wondering: is THAT an invisible symptom of RA as well??

    The outcome for me, however, is that I am having to process all over again what it means to have this blasted disease. I had to admit to myself that the disease is no longer an interruption. It is the baseline. Flares or good days– each are just as fleeting as the other.
    And, I must remember not to piss off the RA gods.

  9. Post
    RA Guy

    I appreciate everyone’s feedback, thank you.

    Yes, one of the thing that still continues to amaze me about this who RA thing is how quickly it can turn on a dime. Even though I’ve been through it many, many times – it still continues to amaze.

    As per the family, I’d liked JG’s comment “the reason people are in denial are ultimately because of their own issues, not yours”. I just recently realized this. (The learning curve of RA never ends, does it?) 🙂

Leave a Reply

Your email address will not be published. Required fields are marked *