Thursday, August 20, 2009

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.


MissDazey said...

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.

Kelly said...

Miss D,
Great point!

kcsalmi said...

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.