Advice on Rheumatoid Arthritis From the Perspective of a Polio Survivor

Adjusting expectations

Today, I have a treat for you – a visit from an extraordinary friend. She speaks with authority because she speaks from experience. In 1946, her body was attacked with polio from head to toe, even her brain.

She fought her way back and regained use of most of her body. However, several disabilities persisted. Today, she lives with Post-polio syndrome.

But these facts are not her best qualifications to talk to us about living with chronic disability and persistent pain. Let me tell you what I think those are:

Ms. R. is the most sincerely joyful person imaginable, even in the midst of difficulty. She was the first Non-RA’er I ever knew who had an obvious understanding my challenges. Repeatedly, her words have hit the nail on the head even though she had no clue what challenges I faced that day. So, whenever she gives me any advice, I take heed.

Recently, I asked Ms. R., “Can you tell us how to deal with people’s expectations as we become less-abled? How do you explain that you cannot do what you used to do anymore?”

Here is her reply:

The hardest person for me to convince is myself. I go through, as honestly as I can, a question and answer quiz of my "Yes, I can" and "No, I can't" appraisals. I still go through a guilt trip regarding the negative answers.

Fortunately, I have accumulated a number of years' experiences that help me. My physical situation does not stay static, so there is always the challenge and taffy-pull about being a malingerer or a coward.

When I finally come to as honest an appraisal as I can, I step out and either accept the challenge of the expectation, or I say, "I am sorry, but I cannot do that." If the other person is open to any further explanation of my answer, I share my processing. If the other person is not open to needing or wanting any further explanation, I say nothing further.

Whatever the outcome, I leave myself and any others concerned in God's care and loving wisdom. Those of us challenged to move our body, or to think clearly for more than a few minutes without resting, do have to work out rules that we can function by. We become sensitive to the people around us, because we thrive when they express confidence in our judgments of what we can and what we cannot do. Hooray for votes of loving and respectful confidence in us by others!

Then there are the times that people write us off according to their own perceptions. Take courage and lean on the Lord and those friends and family that He gives us. The only good thing about fighting to move or function is that we do learn to lean upon our Father's loving promises and presence.

A Message from a Young RA Warrior

Wait, hope, pray, and…

Hello, everyone. My name is Katie Beth Young and I have a few words for those with AND without a Rheumatoid Arthritis diagnosis.

You might have read my mom’s post called The Me Before Rheumatoid Arthritis. Next month, I’ll be 17 so I remember the stucco days. I remember the landscaping, the hundreds of perfectly frosted and decorated cookies for a baby shower, the Christmas decorations and delicacies, the spick and span house, etc. I was the little kid in the overalls in one of the pictures from that post. I know firsthand what Rheumatoid Arthritis can do to someone’s life.

My own life has changed also in so many ways. I must be strong for my mom as we wait for a cure. Even though sometimes I truly feel there’s nothing I can do, I try to find as many ways to help as possible.

Margaret Becker is my very favorite music artist. She has a song called “I Won’t Be Persuaded.” If you don’t mind, I’d like to quote the chorus: “I don’t understand where you are in all this. Still I wait and hope and pray, and I won’t be persuaded…” That’s what we do: We wait for a cure, we hope for a remission, and pray for strength.

Sometimes there’s nothing else to do. But, I think maybe in this situation there’s one more thing: Act. We can act.

Those who have Rheumatoid Arthritis need to bring awareness to the rest of the world. They are the only ones who can. They have to make the doctors listen. They need to let those who do care help them. They need to fight! I am not in the position to tell them what to do, but doesn’t it seem hard enough to have RA without all that, too?

However, I AM in the position to speak to everyone else. Action needs to be taken by those who love people with Rheumatoid Arthritis. More than one type of action. I know you didn’t ask for your loved one to become disabled and sick, but they didn’t ask to BE disabled and sick either. Here are a few examples of the things I do to try to help.

I go with my mom on her errands and especially to her doctor’s appointments. While being encouraging is important, I find comfort in actually helping physically. Whenever we are out, I offer to take my mom’s purse for her. If you have RA, you know how heavy even a lightweight purse can be to an affected shoulder, wrist, hand, etc. Some doors are so heavy that no one with Rheumatoid Arthritis would ever get in unless someone opened it for them! For goodness sakes, open the door for them.

At the grocery store, I pick up the juice bottles and cans. I let my mom point at what to get and I get some. No big deal – for me.

My sister and I help my mom make dinner every night and do it ourselves sometimes. Picking up pots and opening cans doesn’t cause us trouble. We try to keep the kitchen clean. I remember the time not too long ago when we never even washed the dishes, our mom did it all!

Just as important as the physical help is the support of a listening ear. Let your mom, dad, sister, friend tell you about the pain and fatigue. Let them be heard. They say we don’t understand, but why can’t we try? Most of their suffering is kept to themselves; after all, the pain is constant.

This is just a start to everything we can do to show the people we love that we care. No, it’s not even showing we care; it’s doing the only right thing. Think of it this way: what would you want if you were disabled, in pain, and hoping for a remission? You’d want someone to open the door, for goodness sake.

I hope I didn’t bore anyone, this being my first time and all. I suppose I’m not quite as witty as my mom! ; D Wait, Hope, Pray… and Act.

I recommend you also read The Me Before Rheumatoid Arthritis and

A Memo to Non-RAers.

Friend of Rheumatoid Arthritis Warrior Shares Her Heart

I 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?

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?

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 it 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 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?

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 DEFINETELY 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?

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.