Advice on Rheumatoid Arthritis From the Perspective of a Polio Survivor

Adjusting expectations

sun on shore in DestinToday, 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.

Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

10 thoughts on “Advice on Rheumatoid Arthritis From the Perspective of a Polio Survivor

  • August 20, 2009 at 10:10 am
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    Thanks Ms. R for sharing. This was particularly interesting to me since I had a brother-in-law who had polio is the mid-50's. He spent 30+ years in an iron-lung and rocker bed. A dear friend had polio as a kid, wonderful lady who had the post-polio affects in her 60's.

    I know it's good for me to understand that chronic disability and persistent pain is not limited to RA and OA.

    Reply
  • August 20, 2009 at 9:44 pm
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    Ms. R thank you so very much for sharing with us and Kelly thank you for sharing with us such a wonderful friend with such insight into pain and disability. I feel so much less alone in my disability knowing that it is not just me who has to say yes I can or no I cannot and that I am not the only one to have been written off because of it. Thank you, while it does not take the pain away I feel so much less lonely in my journey.

    Thank you and best of luck in your journey.

    Reply
  • January 26, 2010 at 12:03 pm
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    Kelly, I can’t believe that I missed this post in your blog! As you may remember from my onset story, I also had Polio (in 1958) and am also dealing with the double whammy of Post Polio Syndrome and RA. Sometimes it is very hard to tell the difference. Ms. R expressed the process of decision making very well. I have only come to be able to say “no, I can’t do it” without (as much) guilt in the past few years. I’d like to add some comments about how similar post polio and the onset of RA are.

    Studies on folks who have had polio show that we are overwhelmingly overachievers. We were taught early on to push ourselves harder and to be independent. Statistically, more polio survivors are married and have advanced degrees than the population as a whole, not just within the disabled population.

    Post Polio Syndrome is thought to be from overuse of our already taxed motor neurons and muscles. Many of the symptoms are quite similar to RA. The pain, the exhaustion, the weakness. It is also largely invisible. Our friends and family can not see these changes that are occurring in us and so expect to continue to be super-mom (or friend or sister….) I’ve had family members and friends get very angry at me for not being able to do things that I once did without hesitation (but not without pain). I’ve been accused of being lazy and non-caring. These are problems, but the biggest problem is my own guilt at no longer being as independent as I once was. It has, and continues to be, a very long journey to accept my new limitations and to know that they don’t make me any less of a person than I was before them. I believe that once I’ve accepted that, I won’t be as bothered by the comments of others.

    Kate

    Reply
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  • March 12, 2011 at 12:28 am
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    Thanks for all the comments. Two months ago, “something” happened that caused half of my dominant hand to go numb/tingly/painful. It was a dramatic on-set. That helped me be able to say “No, I can’t do that”. When it is “just RA” it is more difficult to say NO, because the RA creeps up on you. If I could do it yesterday, then why can’t I do it today? So it is more difficult to stand up for myself….. But having this nerve thing effect my hand has helped me realize that I should still be able to say “I can’t today”! (BTW, I have surgery in 3 days, to hopefully fix the Ulnar Nerve Transposition.)
    Thanks for listening! love, Nina

    Reply
    • March 12, 2011 at 11:45 am
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      Good luck with the surgery Nina. I hope it works great for you.

      Reply
  • March 24, 2011 at 11:07 am
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    Thank you for your site. I have attempted to remain positive since my diagnosis 6 years ago with Rheumatoid disease. Initially, I was grateful because I am a registered nurse, and was under the impression that I was at least in a career with others who were compassionate and had some understanding of limitations. How wrong I was. When my disease went into a continuous flared state (after my brother died, after I changed my shift to work 12 hour day shifts {instead of night shifts where I can pace myself) to help with staffing losses. I had to use my sick time a few times, but while on day shift, I went into work, even when it would have been better for me to have stayed home,and rested. After I fulfilled (survived) my day shifts, I was told by my boss that the day shift had concerns about my ability to physically do my job. I asked if I had missed something, or if I had not completed my assignment satisfactorily. I was told that I did a beautiful job, but they were concerned about my abilities (This flare consisted of inflamed left ankle with rheumatoid nodules covering the sole of the left foot, I was unable to fully extend my right elbow and unable to lift my right shoulder above the elbow level. Still, I worked my 12 hour shifts surrounded by a bunch of people who really didn’t know me very well. When I apologized to my boss and explained that I was doing the best I could and that tomorrow, the flare may be completely gone. I shared that I was disappointed in the other shift colleagues. I cannot understand how we can work with patients, encourage them to do as much as they are able, but that we are not supportive of our colleagues, nurses who know the multifaceted problems associated with a chronic disease. I was viewed as a belly acher. I was informed that one of my colleagues has leukemia and HE manages to come to work and not miss shifts. OUCH!! Sorry that he has leukemia, and more sorry that he has decided to put himself on the line with such an awful disease, and even more upset that he and I are being compared. In a similar vein, perhaps to bridge the gap, my boss told me that she had gone for her first massage and confided in me that she thinks she has OA. I wanted the earth to swallow me up. I felt guilty. At that moment, I wanted her to have rheumatoid disease. I didn’t want to loan it to her, I wanted her and every one of my colleagues who don’t understand to take my rheumatoid disease from me just as easily as they stomp on my dignity. I have SO much to offer to others who I provide care for. I have been a nurse for 20 years. I have given credit to rheumatoid disease for making me a more compassionate nurse and a better person in general. I feel guilty often for wishing this disease on them all. I have pointed out my disappointment in nurses who are seeking advanced degrees, Beacon awards in nursing, and attempting to achieve Magnet status for our hospital (the most prestigious awards for nursing and for hospitals) but they are totally unaware and have no desire to know that a great majority of our patients in our open heart surgical unit are affected by rheumatoid disease and they are totally unaware of the affects of rheumatoid disease on the internal organs. How can you offer the best care for our patients if you don’t recognize the effects of the disease on things like mobility (getting a patient mobilized after surgery), knowing to assess the patient for pericardial effusion, because they are more likely to develop these complications. Even after mentioning this, my colleagues roll their eyes. I stand strong on the belief that you can teach anyone any task. That procedures can be learned, but you cannot teach compassion or integrity. That is something that you either have or you don’t. Advanced degrees, awards mean very little to me when you lack the very heart of nursing. Why is the medical community still ignorant to this disease?

    Reply
    • March 24, 2011 at 1:12 pm
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      Belinda,

      Thank you so much for posting this. You are an inspiration! I am so grateful that there is someone like you out there in the healthcare industry advocating for us!! Thank you.

      Reply
  • April 12, 2011 at 8:44 am
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    I too am a polio survivor. A friend who lives very close (in the same mobile home park) is an RA survivor. She and I have often compared notes on our conditions and found them quite similar. Pain, days when nothing works, days with some things work. Both of us face criticism from friends and mere acquaintances. Both of us try hard to know ourselves and our limitations better every day. Both of us have learned to discount guilt in our lives. Both of us know that God IS in charge of what occurs in our lives. We’re going to make it!!!!

    Reply

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