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I Am Not Pitiful

I Am Not Pitiful

This past week a friend asked about my health.  They were sincere in wanting to know how I was doing, and I gave them the capsule overview.  That is when my friend paused and commented about how he felt bad for those with crippling arthritis. Then he said in an off-handed way he thought those of us with RA are pitiful.  Pitiful?  I am not pitiful.  He corrected course immediately when I reminded him; I am doing well for a guy with three autoimmune conditions.

Multiple autoimmune conditions

Yes, he agreed I was doing well, he was speaking about those who became crippled with the condition.  Oh, so all of us?  I mean take away the infusions, and I am likely not walking in less than three months.  He backtracked once again.  That was when I let him off the hook.

But should I have let him off the hook so easily?  One of the issues with a condition people do not see is that they do not see it.  We do not have a sign for pain, fatigue, tiredness, or lack of sleep.  Should I hold up a card, so everyone can see my self-rating of pain?  Maybe a card hung around my neck with a score of 1-10?  Mine would be marked 5 or 6 each day, but some days it would go up and some down.  Perhaps I would not have to let my friend off the hook next time I see him?

My postcard collection

I have an old postcard collection, and some of them are delightful to look at.  I received these postcards from a neighbor of my grandmother as a child.  When they were readable, you could trace a three-way love affair between two ladies and one gentleman (the donor’s deceased husband I believe) throughout several years beginning in about 1912 until about 1925.  The writing on the back was the most interesting part as the women were writing the bachelor regularly asking for attention and reminiscing about encounters they had been part of with the gentleman.  I do not know if the lady who gave them to me had any idea what was detailed on the back of these cards, but I can say it was interesting reading for a 12-year-old boy.

What I realized is that some of the most formal cards detail some of the more torrid remembrances.  Like the Easter Card plea for more attention because of their Valentine’s day encounter.  Or the Christmas card with a picture on the front that says the husband is away, won’t you come and play.    These three to five people carried on an avid letter-writing campaign that was something like slow email today.  I used to love reading them and imagining what these people looked like, and how they ended up, or I enjoyed looking at the cover pictures and imagining those places and times.

Not like the pictures

As fun as reading these stories is, I must remind myself that I do not know much about them.  I got a small one-dimensional look at their lives.  Sure, my mind built images of them and what they were feeling and doing on a regular day.  But in truth, I know almost nothing about these people.  Sure, it was fun to look inside their lives, and yes, I fabricated whole narratives for them.  But that fabrication was not the real person.  It was instead my mental interpretation of their lives.

When we say, we have RA people often jump to preconceived notions of what we are, based on our diagnosis.  They want to categorize us based on their understanding of the condition.  They overlay on us their history of how they have experienced people who have the disease.

Of course, we know we are not one dimensional, we are more than pain, joint disfigurement, organ involvement or any other symptom.  I know no one can classify me based on Rheumatoid Arthritis, Diabetes, Ankylosing Spondylitis or anything else.  I am all those things and more, and for my friends benefit, I am not now and never will be pitiful. Anyone who thinks otherwise will be corrected quickly. It is true I may need help sometimes or I may need a ride when my feet do not function so well, but the last thing I need or will accept is anyone’s pity.  Any person who tries to give it to me is not a friend, they are at best an acquaintance and one I might well forget sooner than later.

Visit a few of Ricks postcards at this link

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Comments

  • CynthiaV
    2 months ago

    I’m not pitiful either and I refuse to allow anyone no matter how well meaning to classify me as such. I am still the person inside that I was before my dx. Do I hurt? Yes. Am I tired, exhausted? Yes. Is it more difficult to do the simple things that I did without thinking before? Oh yes. But I am not pitiful. Save your pity for someone else. Empathize with me but never pity me because I will never pity myself.

  • Drenda
    2 months ago

    I’m an RA WARRIOR of 21 years. I was only married 2 years when diagnosed. I have to admit there are days I feel pitiful, but with a loving husband and 3 children once I explained that unless I ask for help I would like to try doing things myself. I personally think your friend just chose the wrong word in describing what he felt. I’m glad you let it go. Sometimes it is better to see what they see. We want them to understand what we go through; and we must understand what they see.

  • starscream
    2 months ago

    I’m confused by the first two paragraphs of the article. It sounds like your friend was concerned and he said he pitied you (which is what pitiful means), and then you didn’t want his pity, so he backtracked saying he meant he pitied those who were crippled by arthritis, and then you are angry you don’t have a sign showing how much pain you are in because why? You want his pity after all? What is the point? Either be consistent that you want no pity or be consistent that you do want pity. Or does the word “pitiful” mean something different to you?

  • Lawrence 'rick' Phillips author
    2 months ago

    I may have been a little tough on my friend, but I hope not. My friend is a great guy who made a small mistake.

    I think that my note may have give the wrong impression. We are still buddies and my words above reflect my thoughts as much as my direct words.

  • starscream
    2 months ago

    I’ve had RA for six years now and I don’t want any pity for it yet. I don’t tell people I have RA unless they do to. I will say I’m not feeling well or am having a reaction to something I ate or that my knees are bad, and then I accept the pity on that occasion. The old “hope you feel better soon” can be painful to hear but is well meant. As for pitiful… when it gets really bad and the meds fail, and I do end up unable to walk or move… then yes, that is horribly pitiful and at that point I will need all the compassion I can get to survive. I don’t deserve it yet. I don’t need it yet. I’m lucky to be able to afford the meds I need and respond well enough to them to get around slowly. But yes, one day I will be as deserving of pity as many people here and many of the people we see at the Rhuematologist’s office.

  • Leighp
    2 months ago

    Rick
    Great thought. I think we need to give our friends a pass, perhaps after a little educating. See we do our best to not look sick, and they dont really know what we are dealing with. Invisible illnesses make others awkward and they blurt out awkward, inappropriate things.

    Hope you are well.

  • Lawrence 'rick' Phillips author
    2 months ago

    I also think we need to give friends a pass. I was a little rough on my friend in this article, the fellow is a friend, but even so I hope he will not make this mistake again. 🙂

  • EmmaCB
    2 months ago

    Though-provoking post. (And the postcards are beautiful.)

  • Lawrence 'rick' Phillips author
    2 months ago

    Emma, I am gad you enjoyed the post cards. I believe I have about 10 of them and they are fun to look at. Perhaps I will have the opportunity to display some addition cards in the future.

  • Carla Kienast
    3 months ago

    I’ve often wondered if people could see my hip, knee, and two shoulder replacements if their reactions be different? There are times when I’m grateful that my RA is invisible, and there are times that I wish people could see it so they would have a better understanding. Thanks for a great article and for sharing the wonderful postcards!

  • Lawrence 'rick' Phillips author
    3 months ago

    Thank you Carla for the most kind words. I went through security at the airport a few days ago and ended being hand searched. The wand detected the ore mine I keep in my foot and ankle and the agent said wow you must have some extensive metal there.

    Not really I say, it is where I keep all my money. Given the cost of putting it all in my body, I was not telling a fib.

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