Friend of Rheumatoid Arthritis Warrior Shares Her Heart | Rheumatoid Arthritis Warrior

Friend of Rheumatoid Arthritis Warrior Shares Her Heart

RA warrior friend tulipsI am so lucky to know a dear lady who sends me letters of encouragement about this blog. She is the widow of a man who lived with RA. I always wish everyone had an opportunity to hear some of her clever and uplifting words, so today I am sharing some of them with you.

I give you my friend Dorothy, one of the funniest senior saints in the world. I hope you can hear her smile.

You know what Rheumatoid Arthritis is because your husband Gil had it, right?

I know what it is and every effort you put forth is sometimes like taking money out of the bank. It is NOT like, “If you would just exercise those joints, all this would go away.”

How did his RA start?

He was also a florist. It became difficult for him to even cut the stems. That is when we noticed the decline, which got severe in a short time. Most noticeable PAIN was in his hands. That is why I cringe when I think of squeezing your hand that day, but within a few months he began to have difficulty walking. He ultimately had to use a wheel chair. Remember that he was also dealing with the COPD which is probably unrelated, but compounded the RA issue.

How did people react to his RA?

ABSOLUTELY MAGNIFICENTLY! They were compassionate, supportive, loving. When Gil could no longer leave the house, they came to see him. He was so active in the church. The RA was an added burden that did really COMPOUND his original problems, causing the additional pains. And, ultimately crippled him.

Do you think you understood his RA?

Even though I saw my husband suffer so much to the end, I am sure there is something missing in MY comprehension of exactly how it is because I personally have not endured the physical suffering. Only the pain of seeing someone you love suffer. And there is the impotence you feel in watching and not being able to help. But, it is still not the same as being the victim, of course.

Thought for the day: Never criticize a person until you have walked a mile in their shoes. That way, when you criticize them, you are a mile away from them… and you have their shoes.

People just don’t have a real sense of the depth to which RA reaches and the attack it renders on the body.

Do you think anyone else understood?

It is difficult to relate to RA unless you have it. I agree that a person who has not experienced RA cannot have that level of understanding & compassion. Somehow, “I know how you feel” sounds like a platitude. And you want to shout out HOW IN THE H… CAN YOU POSSIBLE KNOW HOW I FEEL? Can YOU move your arms today without screaming? Can you pick up a bag of groceries? Can you carry a pot to the stove? Can you cut a flower stem to make an arrangement for your church? Do you PRAY no one will squeeze your hand when you greet them? Then how can you know how I feel?

Do you read the RA Warrior blog?

Sometimes I think I am a SPY because I do not have RA. But you are such a beautiful crusader for this cause that I feel compassionate and enlightened by each message I read. HEY, I loved your “compassion” message to Mrs. Smart A_ _—uh Toes.

SO often when I read the joyfulness, then also the sadness, in your messages, I realize that in addition to the agony of having to live each day with a crippling disease that was in charge of everything Gil did – that controlled his entire body no matter how optimistic he tried to be. It was frustrating to see that even those close to him, didn’t have a clue. Maybe even myself.

What was the hardest part with your husband?

He did not want PITY… just understanding. As I think you do also. It is LONELY out there when you are the only one who understands anything. And especially something which controls a MAJOR part of your life. No, he DEFINITELY did not want sympathy, but, yes… understanding. Here was a man who sewed all the drops and costumes for VBS, made CHOIR ROBES, did all the flowers for the altar. He bought them wholesale – RAW – and he cut them, arranged them, and carried them to church.

Later, we had to get them for him… he would try to tell us where to cut because his hands could not manage to cut through the hard stems. And later, we even had him tell us where he wanted them to be placed in the arrangement. He would not give it up. When he was wheelchair bound, he would have us take him to the church hall so he could instruct the others to make the VBS stuff.

So, if he had a GOOD DAY, a well meaning friend would say something stupid, like, “Well, I bet you are glad THAT crud is over” or like “Glad you are your old self again.” They did not have a clue.

Maybe when YOU hear stupid stuff like the lady at the beach, it is NOT that you want them to feel SORRY for you. You just want them to UNDERSTAND. You want them to be EDUCATED about RA.

You, Mrs., have 5 kids at home! You are NOT a “gimmee stuff princess.” You do NOT want sympathy – just understanding as Gil did.

He just wanted it to be OK if he was not the same as before and if he had to back off some things. Rather than, “I guess you are tired of doing the flowers… or the VBS… or anything.” Like he was glad to get rid of it. He HATED to give up ANYTHING.

What did you wish people knew about RA?

Adding to that, I believe, is the frustration of the cavalier attitude and responses of those with NO CLUE where RA has taken a person. The road it has forced you to travel and I believe THAT is the – well, maybe even hurtful part. You shaved so “you must be all BETTER” as if a miraculous cure had taken place. Like when we get over a COLD, and feel great now. They never knew how laborious it was for him to shave, as it may be for you to wash and fix your hair, then hear, “OH, you did your hair. I am so glad you are all better.”

You have been a big help to me by sharing so much about Gil.

Thank you, Kelly! Thank you for being transparent in this. I am transparent about my Life, my faith… everything except my health. I am always “FINE” … “GREAT,” etc. You make me realize that sometimes it is OK to say, when you responding to a friend, to someone who really cares, “I feel terrible”, “I hurt”, “I am having trouble breathing today.”

Thank you, Dorothy, and I do feel like you understand.

That’s why my prayer for you is constant: That God fills you with His peace and His strength so that each time you go through a tunnel, you can SEE His beacon lighting the way for you, leading you back to the mountain top. I somewhat love you, you know.

Recommended reading:

Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over fourteen years with unrelenting RD. See also https:/

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9 thoughts on “Friend of Rheumatoid Arthritis Warrior Shares Her Heart

  • July 3, 2009 at 7:00 pm

    Thanks to both Kelly and Dorothy for this post. (I am wiping tears.) I can relate as much of my story is similar to Gil's. I admire the courage and strength this couple had.

    Dorothy, please keep reading Kelly's blog and commenting. Your experience can be a great help.

  • July 3, 2009 at 11:59 pm

    That's what it is!! Pity! I don't want it, but I want understanding. Thank you for your sweet words, Dorothy and Kelly. I look forward to each day so I can read a new post. It's like talking with an old time forever friend.

  • July 4, 2009 at 7:31 am

    Miss D,
    Dorothy is a spy, remember?

    But, she stays close by…

    Actually, I have asked her to write a full post soon since she is a great comedienne and so wise. Maybe your encouragement will bring her out! Hahaha. 😀

  • July 4, 2009 at 7:32 am


    I am glad to have you for a new friend, too!

  • July 4, 2009 at 12:02 pm

    I found your sight accidentally and feel thankful. Dorothy sounds like a beautiful person. Its so true people don't realize you can have a good day and bad day. I don't want pity just understanding. I will be a follower of your blog hope you don't mind

  • July 4, 2009 at 12:56 pm

    It is great to have you on board!
    How did you find it accidentally?

  • July 5, 2009 at 4:48 pm

    I subscribe to sight where people are asking questions and saw your answer and that you had a link with your name I am forgetful but think it was web md sight. Then I looked at all of your readings and was hooked and looked at your fav blogs so started reading. I am on humira and many other meds. I am 55 and had to retire early due to my disability and some of your fav blogs so find it interesting, so thank you and God Bless

  • July 5, 2009 at 5:49 pm

    That is neat. I am glad you are finding the blogs helpful. There are several good ones.:D

    God bless you, too.

  • April 8, 2017 at 1:44 pm

    What a sweetheart!
    Yes no pity but please be kind and have some empathy.


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